I think most people know that I generally have a very positive attitude to disability, especially my own disability. Obviously I have my down days and I do have depression. But it's really rare that it's related to being a crip. If disability does come into it it's often due to the attitudes of others or access issues.
Being positive about having CP and needing to use a wheelchair is something I've always been. it's something I've grown into an has evolved throughout my life. I've noticed that a lot of disabled people can't always relate to that and people have even accused me of lying or deluding myself when I say I like being disabled and that there are positive things with it.
My first thought was that it's lifelong disabled people who tend to be the disability pride, positive type people. But then I came to the conclusion that whilst as a group we might be more likely to be positive in my opinion it's not that clear cut. Not least because three of the most positive about disability crips I know have acquired disabilities.
At the same time as being positive, I also need to be realistic. The two aren't always easy to reconcile. And sometimes I have to stop and think about appropriateness.
I went to a workshop at the weekend. As a part of that we did some stuff with Facebook. One of the guys there sent me a message after that asking about my disability as he has a child with CP.
I'm always open to chatting to people about these things. So I wrote a message back. You know saying that yes I've got CP and similar things. Then I stopped to think and realised I'd written
"that's cool that your child has CP"
Totally inappropriate. I think CP is cool but you know it's not the thing to say to someone you barely know. I was really stuck for what to change it too. That's good is also out. And I refuse to be all I'm sorry to hear that because disability isn't a negative thing always.
I edited it and just asked how old the child is. But it really made me think about my attitude and how and why it interacts with other people, their attitudes and experiences. I didn't come to any conclusions but it was an interesting thing to think about.
♥ Emma
Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts
Monday, 5 March 2012
Tuesday, 10 January 2012
What Access Is - And Isn't #spartacusreport #disability #access
A few situation I've encountered when it comes to "wheelchair access" and what I'd like to have said in return.
If you've got toilets on the ground floor but not a disabled toilet then don't tell me you've got wheelchair access.
If you had wheelchair access you'd have a disabled loo. A toilet which has no grab rails and which you can get a wheelchair in but not if you want to shut the door is not a disabled loo. So kindly take a moment to stop a think and stop claiming you've got one.
Don't tell me you're really used to dealing with wheelchair users and then tell me you can't do your usual programme with me because of my inability to stand unsupported. If you dealt with as many wheelies as you said my level of disability wouldn't be a barrier and I'd be doing what everyone else does.
Your suggestion that I can travel via London Paddington and save time by taking the tube from there is helpful. As is your telling me that there's partial access in the tube station and my journey is doable. Unfortunately the reason you couldn't convince me is that there's no wheelchair accessible way into the tube station there. Listening to me and letting me get a word in would have saved us both the argument.
I asked if you had accommodation that's adapted. "We have ground floor rooms" isn't an answer. Because adapted means a shower seat, grab rails and being able to get my chair right in the room.
I'm really grateful you've made an arrangement to adapt things for me. But the reason I said I couldn't do that was because I can't. So adding on "unless you want to try the unadapted way that is." is pointless. I'm 30. I've lived with my disability my whole life. I know my abilities and limits. I don't need to be told to try something.
Having one or two steps and a movable ramp makes me think you've thought things through. When I arrive and it turns out one or two is actually seven dotted around the place. And that the ramp is moveable but you won't let my carers move it? I'm going to be pissed off. But not as pissed off as you'll be when I fall out of my chair on one of the steps and cause a bit of a panic.
If you've got toilets on the ground floor but not a disabled toilet then don't tell me you've got wheelchair access.
If you had wheelchair access you'd have a disabled loo. A toilet which has no grab rails and which you can get a wheelchair in but not if you want to shut the door is not a disabled loo. So kindly take a moment to stop a think and stop claiming you've got one.
Don't tell me you're really used to dealing with wheelchair users and then tell me you can't do your usual programme with me because of my inability to stand unsupported. If you dealt with as many wheelies as you said my level of disability wouldn't be a barrier and I'd be doing what everyone else does.
Your suggestion that I can travel via London Paddington and save time by taking the tube from there is helpful. As is your telling me that there's partial access in the tube station and my journey is doable. Unfortunately the reason you couldn't convince me is that there's no wheelchair accessible way into the tube station there. Listening to me and letting me get a word in would have saved us both the argument.
I asked if you had accommodation that's adapted. "We have ground floor rooms" isn't an answer. Because adapted means a shower seat, grab rails and being able to get my chair right in the room.
I'm really grateful you've made an arrangement to adapt things for me. But the reason I said I couldn't do that was because I can't. So adding on "unless you want to try the unadapted way that is." is pointless. I'm 30. I've lived with my disability my whole life. I know my abilities and limits. I don't need to be told to try something.
Having one or two steps and a movable ramp makes me think you've thought things through. When I arrive and it turns out one or two is actually seven dotted around the place. And that the ramp is moveable but you won't let my carers move it? I'm going to be pissed off. But not as pissed off as you'll be when I fall out of my chair on one of the steps and cause a bit of a panic.
Sunday, 12 June 2011
Why I'm Going Off The Term Spoonie
For the past several weeks, in fact probably the last two months or so, I've been really going off the term Spoonie. I mentioned something about that on twitter earlier this week and it didn't go down well. I sort of had the impression that, perhaps, people were reacting to what I'd said without looking at all of what I'd said. This is my attempt at explaining myself properly. Please don't take offense, these are my views and only that. I in no way mean to imply that I think the term shouldn't be used. It just doesn't work for me.
The Spoon Theory is a way of describe what it's like to live with a long term condition and to need to break activities down into chunks and weigh up options to get through them. It's more about the energy side of things than anything else and is a bit more suited to people with variable conditions. I occasionally find it a useful starting point at times to make people understand but it's never been a good fit for my own disabilities. People who use The Spoon Theory or who live their lives in a similar way due to a disability or health condition are called Spoonies. There is quite a big group on twitter who use the term to identify themselves.
I have CP, which is a lifelong disability and on the whole is a static condition (basically CP IS static but the affects of aging are felt sooner). I also have depression. I think The Spoon Theory (TST) is a great idea, that's a point I need to get out of the way first. However the day to day difficulties I face are more to do access, attitudes, equipment and facility availability. Energy is a concern of mine but secondary. Partially this is because I haven't ever known any different so it's normal to me and I almost do these things without thinking.
Where TST does work well for me is in explaining the concerns I have to take into consideration - is the venue accessible to me, which wheelchair to take, how can I get there, will assisted travel work out or if someone gives me a lift, is there disabled parking nearby? What distances are involved, do I need to take someone with me, is their a disabled loo, lifts, tables in venues that I can sit at? (a venue with fixed chairs at tables is no good for me). And the big one, have the people I've checked access info with got it correct. (See Hannah's latest blog entry for an example)
I try to show a balanced view of disability in my blogging and in my life. I don't want to be all Pollyanna and annoying and look how perfect and wonderful my life is but I want to show that being disabled doesn't have to be a bad thing and that disability does have it's positives (I wrote more about this is my Disability: It's Not All Negative post on Scope's website). However the term Spoonie seems to me to be used mostly in more negative situations. Which is fine but goes against what I want to do in my life and how I want to be perceived.
The other side of that same point is that I've seen both as a CAB adviser and in other aspects of my life how things can lose their power if they only focus on one aspect all the time. When I first heard about the term spoonie I thought it had the potential to be a very powerful term in many different ways but sadly now I fear it's losing it (and possibly even becoming disempowering) which is part of my beginning to feel uncomfortable with the term when applied to me personally. I'd really love to see a new hashtag started spoonie positives.
Something I can be guilty of doing at times is the "everything is because of my disability" assumption. I don't do it as much as I used to but it can be a trap I still fall into at times, particularly when I'm having problems with my depression as I have done recently. A friend and I were discussing just that lately - she also finds it hard. But she also said that in her opinion (she's a tweeter and disabled but as I haven't asked her permission I won't share who) she see's a lot of "this is happening just because I'm a spoonie" going on which in some cases is overuse (she thinks and I can see what she means although it didn't occur to me). Obviously it IS hard to know what is and isn't because of disability and I get really annoyed when people say "would you... if you weren't disabled" because how should I know?!
I think probably the biggest part of my issues with the term Spoonie as they develop and I come to understand them more is that I'm not the "right" sort of person for it. I don't know about living with an acquired disability or health condition. I don't know what it's like to have your life change drastically. And I don't know what it's like to wonder what you'll be able to do tomorrow - and what you won't. It appears to me that most people using the hashtag have conditions like that. So when I see comments like "all Spoonies dream of a cure" (I would turn a cure down) "we all wish we could go back to how things used to be #spoonie" (I have no before and chose acceptance rather than dreaming of what might have been had I not been deprived of oxygen at birth) "Spoonies are always in pain and tired" (I'm not) etc etc it makes me uncomfortable. Because those aren't my experiences. But, that said, I've always had a problem with labels being applied to me and being shoehorned into groups.
Oh and I haven't seen this myself but some friends tell me the term spoonie has been mistaken for a sexual thing a few times. That makes me especially concerned particularly as you have some potentially vulnerable people using it and people can and do share very personal details about themselves with it. I don't know what a good alternative would be however.
I wouldn't be fair in this entry if I didn't mention the fact that there seems to be a community growing amongst those of use the spoonie hashtag on twitter where people can find friendship and support. That's great. It really is. I'm glad for all those people and I hope spoonie continues to be used - if only for that reason. Twitter has also been great for me for the same reasons.
The other positive thing about the term spoonie is that it's given people who may not be comfortable identifying as disabled or as sick a term they can use collectively for identity purposes as a group. It's not one I would use to identify myself - I'm disabled and proud of that fact - but it's still a valid term and has helped a lot of people.
On the whole as I write this entry I think it's fair to say I have concerns about the use of the term spoonie and it's beginning to make me uncomfortable in many ways but that's just my opinion. What it basically comes down to is - it's not for me.
I'm really curious to know what other people think about this please do comment below or send me a tweet I'm @FunkyFairy22
Emma
The Spoon Theory is a way of describe what it's like to live with a long term condition and to need to break activities down into chunks and weigh up options to get through them. It's more about the energy side of things than anything else and is a bit more suited to people with variable conditions. I occasionally find it a useful starting point at times to make people understand but it's never been a good fit for my own disabilities. People who use The Spoon Theory or who live their lives in a similar way due to a disability or health condition are called Spoonies. There is quite a big group on twitter who use the term to identify themselves.
I have CP, which is a lifelong disability and on the whole is a static condition (basically CP IS static but the affects of aging are felt sooner). I also have depression. I think The Spoon Theory (TST) is a great idea, that's a point I need to get out of the way first. However the day to day difficulties I face are more to do access, attitudes, equipment and facility availability. Energy is a concern of mine but secondary. Partially this is because I haven't ever known any different so it's normal to me and I almost do these things without thinking.
Where TST does work well for me is in explaining the concerns I have to take into consideration - is the venue accessible to me, which wheelchair to take, how can I get there, will assisted travel work out or if someone gives me a lift, is there disabled parking nearby? What distances are involved, do I need to take someone with me, is their a disabled loo, lifts, tables in venues that I can sit at? (a venue with fixed chairs at tables is no good for me). And the big one, have the people I've checked access info with got it correct. (See Hannah's latest blog entry for an example)
I try to show a balanced view of disability in my blogging and in my life. I don't want to be all Pollyanna and annoying and look how perfect and wonderful my life is but I want to show that being disabled doesn't have to be a bad thing and that disability does have it's positives (I wrote more about this is my Disability: It's Not All Negative post on Scope's website). However the term Spoonie seems to me to be used mostly in more negative situations. Which is fine but goes against what I want to do in my life and how I want to be perceived.
The other side of that same point is that I've seen both as a CAB adviser and in other aspects of my life how things can lose their power if they only focus on one aspect all the time. When I first heard about the term spoonie I thought it had the potential to be a very powerful term in many different ways but sadly now I fear it's losing it (and possibly even becoming disempowering) which is part of my beginning to feel uncomfortable with the term when applied to me personally. I'd really love to see a new hashtag started spoonie positives.
Something I can be guilty of doing at times is the "everything is because of my disability" assumption. I don't do it as much as I used to but it can be a trap I still fall into at times, particularly when I'm having problems with my depression as I have done recently. A friend and I were discussing just that lately - she also finds it hard. But she also said that in her opinion (she's a tweeter and disabled but as I haven't asked her permission I won't share who) she see's a lot of "this is happening just because I'm a spoonie" going on which in some cases is overuse (she thinks and I can see what she means although it didn't occur to me). Obviously it IS hard to know what is and isn't because of disability and I get really annoyed when people say "would you... if you weren't disabled" because how should I know?!
I think probably the biggest part of my issues with the term Spoonie as they develop and I come to understand them more is that I'm not the "right" sort of person for it. I don't know about living with an acquired disability or health condition. I don't know what it's like to have your life change drastically. And I don't know what it's like to wonder what you'll be able to do tomorrow - and what you won't. It appears to me that most people using the hashtag have conditions like that. So when I see comments like "all Spoonies dream of a cure" (I would turn a cure down) "we all wish we could go back to how things used to be #spoonie" (I have no before and chose acceptance rather than dreaming of what might have been had I not been deprived of oxygen at birth) "Spoonies are always in pain and tired" (I'm not) etc etc it makes me uncomfortable. Because those aren't my experiences. But, that said, I've always had a problem with labels being applied to me and being shoehorned into groups.
Oh and I haven't seen this myself but some friends tell me the term spoonie has been mistaken for a sexual thing a few times. That makes me especially concerned particularly as you have some potentially vulnerable people using it and people can and do share very personal details about themselves with it. I don't know what a good alternative would be however.
I wouldn't be fair in this entry if I didn't mention the fact that there seems to be a community growing amongst those of use the spoonie hashtag on twitter where people can find friendship and support. That's great. It really is. I'm glad for all those people and I hope spoonie continues to be used - if only for that reason. Twitter has also been great for me for the same reasons.
The other positive thing about the term spoonie is that it's given people who may not be comfortable identifying as disabled or as sick a term they can use collectively for identity purposes as a group. It's not one I would use to identify myself - I'm disabled and proud of that fact - but it's still a valid term and has helped a lot of people.
On the whole as I write this entry I think it's fair to say I have concerns about the use of the term spoonie and it's beginning to make me uncomfortable in many ways but that's just my opinion. What it basically comes down to is - it's not for me.
I'm really curious to know what other people think about this please do comment below or send me a tweet I'm @FunkyFairy22
Emma
Thursday, 9 September 2010
Why is the R word so offensive?
A few days ago an anonymous comment was left on one of my entries asking why the R word is more offensive to me than idiot or moron.
For some reason that seemed to be a bit of a difficult question for me to answer; I'm not sure why. I think for me it's an obvious thing (not that I mean to suggest the person who asked the question is wrong, I should probably make my points clearer when I write). I've been wanting to respond but not sure how to.
I think that both the I word and the M word aren't used as deliberate insults designed to target and hurt a specific group of society any more. I'm not sure of their origins as words. The R word however, that's no longer used in it's correct/original useage - to describe someone with a specific type of disability in a medical way. It's used to ridicule and to hurt a specific group of people. Disabled people. And it's unacceptable.
If you're going to take one thing away from this entry, you could take anything I've written above, I hope I've made it clearer than I did before. But I'd much rather you went and looked at this post about a much loved daughter and the R word. It says it much better than I ever could.
Or you could go and read about the battle Nicky Clark had with Ofcom and Channel 4 about the R word being used. 750 Mencap members gave evidence of the hurt and hate they'd encountered from the R word. Yet it still took a protest and multiple appeals before anything was done. As Nicky wrote in her post, if the terms used had been racist or anti religion the apology would have been immediate. This isn't a small problem, it's a big one. Unfortunately however it's a big one not many people take seriously.
And I'm one of a group of people who want to change that. That's why the R word bothers me more than the I word (idiot), the M word (moron).
For some reason that seemed to be a bit of a difficult question for me to answer; I'm not sure why. I think for me it's an obvious thing (not that I mean to suggest the person who asked the question is wrong, I should probably make my points clearer when I write). I've been wanting to respond but not sure how to.
I think that both the I word and the M word aren't used as deliberate insults designed to target and hurt a specific group of society any more. I'm not sure of their origins as words. The R word however, that's no longer used in it's correct/original useage - to describe someone with a specific type of disability in a medical way. It's used to ridicule and to hurt a specific group of people. Disabled people. And it's unacceptable.
If you're going to take one thing away from this entry, you could take anything I've written above, I hope I've made it clearer than I did before. But I'd much rather you went and looked at this post about a much loved daughter and the R word. It says it much better than I ever could.
Or you could go and read about the battle Nicky Clark had with Ofcom and Channel 4 about the R word being used. 750 Mencap members gave evidence of the hurt and hate they'd encountered from the R word. Yet it still took a protest and multiple appeals before anything was done. As Nicky wrote in her post, if the terms used had been racist or anti religion the apology would have been immediate. This isn't a small problem, it's a big one. Unfortunately however it's a big one not many people take seriously.
And I'm one of a group of people who want to change that. That's why the R word bothers me more than the I word (idiot), the M word (moron).
Saturday, 17 July 2010
Been There, Done That
I've been writing a piece about a woman in a wheelchair over the last week or so. Basically, we're doing a creative writing anthology in the class I go to. The tutor wrote an opening to a story, the premise of which is that this woman owns a haunted mansion and offers £1 Million to anyone who can last an entire night in there. We're all writing our own versions of what happens next.
And as soon as I heard about that idea my first thought was "that sort of place probably wouldn't have wheelchair access" I took that idea and ran with it for my part. Writing it gave me fits but it's pretty much finished now, just needs a decent edit and I might write a bit more of an ending. I gave it the title of "Unreasonable Adjustments" which, as I mentioned before, I absolutely love. I might stick it online when it's done or I might not. Depends what I decide to do with it really.
Anyway at the class on Thursday we each got a couple of people's opinions on our piece. Three people read mine and I got some useful feedback. Although strangely I've since reread it and picked up on a major mistake which none of them pointed out. I did get comments about how it helped them to get into the head of a wheelchair user and see what it was like. I also got told by one guy that he loved my humour and sarcasm and that it was "very Bridget Jones"
I didn't write it to help people see what wheelchair users experience or anything like that. And I never set out to be funny, I rarely do deliberate humour in my writing.
I wrote about
Needing to ask pointed questions about whether you can get your wheelchair in the disabled loo and does it have grab rails - because I have found ones before where you can't. Or where you can but you can't shut the door. Been there, done that. And later on in the story Claire my main character discovers things aren't as they were described. Been there, done that as well. Unfortunately.
About disabled loos being kept locked and staff not knowing where the key is. I haven't had that one but I carry my radar key on my house keys and I have been asked in places to open it for them because they've lost theirs.
Looking for the loo before you're desperate because it takes time to find it and all the other stress that can go with it. Been there, done that.
Staff not knowing that they have a disabled loo despite others saying they do have one when you ask in advance. Been there, done that. In fact at one of my schools a staff member once asked me where the disabled loo was because she had a visitor in a wheelchair and didn't know. What gets me about that was it was they knew in advance some of the people coming were in wheelchairs.
Wheelchair access being around the back, by the bins or otherwise out of sight. Been there, done that. Too many times to count!!
And about finding people having sex in disabled loos. I just noticed that one of the people who did a crit for me has written "good humour, one hopes it isn't based on personal experience" by that bit. And you guessed it, been there, done that. Once. And hopefully never, ever again. Although I didn't actually see anything thankfully...
Yes, a big plot point does revolve around disabled loos.
I can't help thinking however that this might show them "what it's like to be in a wheelchair" from their point of view. But from mine it really doesn't. I don't know what it would take to show that in a story and I'm not sure I want to try. This piece might be fiction and it might be a lot of fun. And I'm really pleased with how it's come out and especially with the feedback. It's a huge part of my life that highlights however. And a part of me does want to go "this is my life!!" and make them see the bigger picture.
But I don't think I will. Because that's a route which often leads to pity and guess what? I've been there, done that. I don't want to do it again!!
And as soon as I heard about that idea my first thought was "that sort of place probably wouldn't have wheelchair access" I took that idea and ran with it for my part. Writing it gave me fits but it's pretty much finished now, just needs a decent edit and I might write a bit more of an ending. I gave it the title of "Unreasonable Adjustments" which, as I mentioned before, I absolutely love. I might stick it online when it's done or I might not. Depends what I decide to do with it really.
Anyway at the class on Thursday we each got a couple of people's opinions on our piece. Three people read mine and I got some useful feedback. Although strangely I've since reread it and picked up on a major mistake which none of them pointed out. I did get comments about how it helped them to get into the head of a wheelchair user and see what it was like. I also got told by one guy that he loved my humour and sarcasm and that it was "very Bridget Jones"
I didn't write it to help people see what wheelchair users experience or anything like that. And I never set out to be funny, I rarely do deliberate humour in my writing.
I wrote about
Needing to ask pointed questions about whether you can get your wheelchair in the disabled loo and does it have grab rails - because I have found ones before where you can't. Or where you can but you can't shut the door. Been there, done that. And later on in the story Claire my main character discovers things aren't as they were described. Been there, done that as well. Unfortunately.
About disabled loos being kept locked and staff not knowing where the key is. I haven't had that one but I carry my radar key on my house keys and I have been asked in places to open it for them because they've lost theirs.
Looking for the loo before you're desperate because it takes time to find it and all the other stress that can go with it. Been there, done that.
Staff not knowing that they have a disabled loo despite others saying they do have one when you ask in advance. Been there, done that. In fact at one of my schools a staff member once asked me where the disabled loo was because she had a visitor in a wheelchair and didn't know. What gets me about that was it was they knew in advance some of the people coming were in wheelchairs.
Wheelchair access being around the back, by the bins or otherwise out of sight. Been there, done that. Too many times to count!!
And about finding people having sex in disabled loos. I just noticed that one of the people who did a crit for me has written "good humour, one hopes it isn't based on personal experience" by that bit. And you guessed it, been there, done that. Once. And hopefully never, ever again. Although I didn't actually see anything thankfully...
Yes, a big plot point does revolve around disabled loos.
I can't help thinking however that this might show them "what it's like to be in a wheelchair" from their point of view. But from mine it really doesn't. I don't know what it would take to show that in a story and I'm not sure I want to try. This piece might be fiction and it might be a lot of fun. And I'm really pleased with how it's come out and especially with the feedback. It's a huge part of my life that highlights however. And a part of me does want to go "this is my life!!" and make them see the bigger picture.
But I don't think I will. Because that's a route which often leads to pity and guess what? I've been there, done that. I don't want to do it again!!
Monday, 12 July 2010
Marginalised
my friend Sarah commented in an e-mail today that
Other people really don't get that ALWAYS having to ask and have help is exhausting and marginalising do they?!
Other people really don't get that ALWAYS having to ask and have help is exhausting and marginalising do they?!
and all I could do was nod as I was reading it and think she'd got it head on again. Plus, marginalising was just the word I'd been trying to think of for it and been stumped by. The best I could come up with was it made me feel like a second class citizen. Marginalised is a much better word although both basically mean the same thing.
After a trying few weeks where things keep happening that leave me feeling like that. And especially with people who know damn well I'm a wheelchair user and should know better, it was helpful to read that.
Thanks hon!
Sunday, 6 June 2010
The Resistance Campagn
If you're in the UK, please take the time to sign this Not Dead Yet petition. It's asking MPs to take the time to sign up and say they support the Resistance Charter. By signing the charter they will be declaring that they will support palliative care and independent living services and also that they will maintain legal protection for disabled and terminally ill people.
There is also the option on the website to e-mail your MP about the issue - which I've done
Basically a lot of people are concerned about what might happen to the rights of disabled and terminally ill people - and the services a lot of people rely on if euthanasia was legalised. Personally I see it as potentially being a bit of a step backwards in terms of awareness, inclusion and disability rights.
Here is the link The Resistance Campaign
There is also the option on the website to e-mail your MP about the issue - which I've done
Basically a lot of people are concerned about what might happen to the rights of disabled and terminally ill people - and the services a lot of people rely on if euthanasia was legalised. Personally I see it as potentially being a bit of a step backwards in terms of awareness, inclusion and disability rights.
Here is the link The Resistance Campaign
Saturday, 1 May 2010
You've come a long way, baby
Today is Blogging Against Disablism Day. I'm not really sure what to write about today and I've been thinking about it a lot, on and off, all day.
The other night I was at an event and I got talking to an older lady. It's to do with a project we're both working on and we'd said we were both interested in doing a certain part of it. There were people from all over this area there but it turns out she lives in the same town as me. In fact I don't think she's too far from me although she's not right on my doorstep and I'm not 100% sure exactly where she is.
So we were chatting a bit and she asked how far I get around in my powerchair. I said about going all round town and going on the train in it to Reading, Oxford, Birmingham etc. Her surprise at that was obvious - it seems she thought I'd be stuck pretty close to home (although she didn't say so in as many words) and she said I'd have to come up to her for a cup of tea.
My first thought about that was that chances are due to access it's not going to happen (old houses where she is I think). Then I was I wondered a bit that she had seemed surprised that I get out so much. I didn't get a chance to think about it too much because the problems with the taxi then occurred. (Off topic update on that, I complained and have heard back they are taking it very seriously and will speak with the driver.)
But it's a long time since anyone's been surprised by the fact I go places. In fact, I'm not sure I remember that happening before. It problem has but not in recent memory. I get surprise about living alone, about sailing and other things that I get up to. Sometimes people tell me that the going off on trains thing is big to them. Not something like going out of the house and getting around in my own town. It's a little thing to me, it really is.
I tell everyone that I do these things "with a disability" because I don't exactly have a choice in the matter. It comes down to the fact that I want to do these things and to do them I have to do them that way. The choice is do it or don't do it. Nothing more than that. And it usually ends up being more than worth it. Not always, but often enough to keep me happy and keep me trying. I didn't tell this lady that because it was just an offhand comment she made which showed her surprise and then she was busy inviting me for tea. It's such a little thing though that I don't think my usual spiel would have been used there. Mostly because I was surprised by her surprise.
I probably would leave this entry here and have it as a bit of a gripe about people's attitudes to disability. Then I mentioned her surprise to my mum.
My mum and I get on really well but at times I think that she doesn't quite get the fight against Disablism and Disphobia. I get frustrated sometimes if she's so OK about things that make me mad. Then sometimes her different perspective makes me think about things differently and that's ok.
So I told my mum about this lady being surprised that I get out and about in my powerchair (and in my manual too but we didn't talk about that). And she pointed out that when this lady was young probably a person like me would have lived in a home (institution). They wouldn't have had the opportunities that I've got and that will come to me in the future.
This lady's point of view is shaped (as all of ours are) by what we experience when we are younger and growing up. I know I can make assumptions based on things I thought I knew because to me they are "normal" and find them to be wrong. It can be quite a hard thing to realise and sometimes it's difficult to admit you're wrong (I'm not trying to say that this lady in anyway needs to apologise to me or admit that).
The other thing that my Mum's comment made me realise was how far we've come. I can see how far things have come in my lifetime and the changes that have happened. They're huge. But I never thought about looking further back before. And that really changes things. As well as making that tiny little bit of surprise make a lot more sense.
The only problem is, however, that I don't think we've come anywhere near far enough. And that's why days like today are so important.
The other night I was at an event and I got talking to an older lady. It's to do with a project we're both working on and we'd said we were both interested in doing a certain part of it. There were people from all over this area there but it turns out she lives in the same town as me. In fact I don't think she's too far from me although she's not right on my doorstep and I'm not 100% sure exactly where she is.
So we were chatting a bit and she asked how far I get around in my powerchair. I said about going all round town and going on the train in it to Reading, Oxford, Birmingham etc. Her surprise at that was obvious - it seems she thought I'd be stuck pretty close to home (although she didn't say so in as many words) and she said I'd have to come up to her for a cup of tea.
My first thought about that was that chances are due to access it's not going to happen (old houses where she is I think). Then I was I wondered a bit that she had seemed surprised that I get out so much. I didn't get a chance to think about it too much because the problems with the taxi then occurred. (Off topic update on that, I complained and have heard back they are taking it very seriously and will speak with the driver.)
But it's a long time since anyone's been surprised by the fact I go places. In fact, I'm not sure I remember that happening before. It problem has but not in recent memory. I get surprise about living alone, about sailing and other things that I get up to. Sometimes people tell me that the going off on trains thing is big to them. Not something like going out of the house and getting around in my own town. It's a little thing to me, it really is.
I tell everyone that I do these things "with a disability" because I don't exactly have a choice in the matter. It comes down to the fact that I want to do these things and to do them I have to do them that way. The choice is do it or don't do it. Nothing more than that. And it usually ends up being more than worth it. Not always, but often enough to keep me happy and keep me trying. I didn't tell this lady that because it was just an offhand comment she made which showed her surprise and then she was busy inviting me for tea. It's such a little thing though that I don't think my usual spiel would have been used there. Mostly because I was surprised by her surprise.
I probably would leave this entry here and have it as a bit of a gripe about people's attitudes to disability. Then I mentioned her surprise to my mum.
My mum and I get on really well but at times I think that she doesn't quite get the fight against Disablism and Disphobia. I get frustrated sometimes if she's so OK about things that make me mad. Then sometimes her different perspective makes me think about things differently and that's ok.
So I told my mum about this lady being surprised that I get out and about in my powerchair (and in my manual too but we didn't talk about that). And she pointed out that when this lady was young probably a person like me would have lived in a home (institution). They wouldn't have had the opportunities that I've got and that will come to me in the future.
This lady's point of view is shaped (as all of ours are) by what we experience when we are younger and growing up. I know I can make assumptions based on things I thought I knew because to me they are "normal" and find them to be wrong. It can be quite a hard thing to realise and sometimes it's difficult to admit you're wrong (I'm not trying to say that this lady in anyway needs to apologise to me or admit that).
The other thing that my Mum's comment made me realise was how far we've come. I can see how far things have come in my lifetime and the changes that have happened. They're huge. But I never thought about looking further back before. And that really changes things. As well as making that tiny little bit of surprise make a lot more sense.
The only problem is, however, that I don't think we've come anywhere near far enough. And that's why days like today are so important.
Wednesday, 28 April 2010
So you had a BADD day
I've got loads and loads to blog about and I'm definitely going to catch up tomorrow. But I just wanted to remind people that Blogging Against Disablism Day 2010 is this Saturday. Please pass the message on and take part if you want to/can. It's really important and it's usually interesting and good fun.
Today I was chatting to the hygienist when I went for a double whammy dentist and hygienist appointment back to back thing. She asked what I'd been up to and I said I'd been swimming this morning. So she was chattering away about how she likes to swim but doesn't go often, which pool had I gone to etc etc etc. Then she asked if I needed someone to come to help me get dressed. I answered her in that sort of automatic way that you do at times - no not with getting dressed, I need help getting in and usually my friends come and do that but sometimes I've got the lifeguards to do it (beach area which doubles as ramped access and a shower chair).
I know that she was just making polite small talk. But that wasn't polite small talk that was heading into the inappropriate disability related question realm and practically out the other side of it too. Not quite sure what's the other side of the realm of inappropriate disability related questions but we were about 1 question away from discovering it. I suspect she may have twigged she'd said something stupid because she stuck to teeth related talk from then on. I'm letting it go, I think.
That can actually be viewed as disablism because she sure as hell wouldn't ask an able-bodied patient that sort of question. I'd like to see her do that actually, probably be quite funny to watch.
I went to an event this evening and they paid for me to have an accessible taxi take me home. The guy got the seatbelt for me but refused to clamp my chair. He kept saying he didn't need to, the seatbelt would be enough - and it is a very short journey I will admit but it's incredibly dangerous and I don't care if we're only going 5 metres or 20 miles, I'm having my chair secured. And I kept telling him he did need to. In the end I told him point blank to either secure my chair or put the ramp back down and I would get out, walk home and make a formal complaint. He didn't put all the clamps on my chair (missed the front on one side) but English isn't his first language and he kept telling me to slow down (I do talk fast at times) and saying he couldn't understand me and I was tired so I figured it was enough for the not quite 10 minute trip. That and the way he was push on my chair really roughly in ways he didn't need to make me think he wasn't sure what he was doing. Which is possible because I know the company do pull guys off their regular cars to drive the wheelchair accessible one as and when needed - and some of them hate it.
That's disablism too because an able-bodied person wouldn't have their personal safety disregarded like that - or at least not when the relevant equipment was available. And they wouldn't have to argue the point so hard. I will be making a complaint.
Those are just my opinions and just one day in my life. Admittedly a worse day than I would usually have although not the worst ever (oh the stories I could tell!). But in my opinion it's what BADD is all about, speaking out about those sort of things.
Please consider taking part.
Today I was chatting to the hygienist when I went for a double whammy dentist and hygienist appointment back to back thing. She asked what I'd been up to and I said I'd been swimming this morning. So she was chattering away about how she likes to swim but doesn't go often, which pool had I gone to etc etc etc. Then she asked if I needed someone to come to help me get dressed. I answered her in that sort of automatic way that you do at times - no not with getting dressed, I need help getting in and usually my friends come and do that but sometimes I've got the lifeguards to do it (beach area which doubles as ramped access and a shower chair).
I know that she was just making polite small talk. But that wasn't polite small talk that was heading into the inappropriate disability related question realm and practically out the other side of it too. Not quite sure what's the other side of the realm of inappropriate disability related questions but we were about 1 question away from discovering it. I suspect she may have twigged she'd said something stupid because she stuck to teeth related talk from then on. I'm letting it go, I think.
That can actually be viewed as disablism because she sure as hell wouldn't ask an able-bodied patient that sort of question. I'd like to see her do that actually, probably be quite funny to watch.
I went to an event this evening and they paid for me to have an accessible taxi take me home. The guy got the seatbelt for me but refused to clamp my chair. He kept saying he didn't need to, the seatbelt would be enough - and it is a very short journey I will admit but it's incredibly dangerous and I don't care if we're only going 5 metres or 20 miles, I'm having my chair secured. And I kept telling him he did need to. In the end I told him point blank to either secure my chair or put the ramp back down and I would get out, walk home and make a formal complaint. He didn't put all the clamps on my chair (missed the front on one side) but English isn't his first language and he kept telling me to slow down (I do talk fast at times) and saying he couldn't understand me and I was tired so I figured it was enough for the not quite 10 minute trip. That and the way he was push on my chair really roughly in ways he didn't need to make me think he wasn't sure what he was doing. Which is possible because I know the company do pull guys off their regular cars to drive the wheelchair accessible one as and when needed - and some of them hate it.
That's disablism too because an able-bodied person wouldn't have their personal safety disregarded like that - or at least not when the relevant equipment was available. And they wouldn't have to argue the point so hard. I will be making a complaint.
Those are just my opinions and just one day in my life. Admittedly a worse day than I would usually have although not the worst ever (oh the stories I could tell!). But in my opinion it's what BADD is all about, speaking out about those sort of things.
Please consider taking part.
Monday, 19 April 2010
Balance
The Disability Blog Carnival is coming soon. And it's theme this time is "balance"
The obvious thing as a CP-er with a topic of balance would be to talk about walking and standing and transferring and the fact that I have very poor balance. I can stand unsupported but only for a few seconds and a physio once described it as "controlled falling" But that doesn't suit me as something to talk about.
There's a lot of other things that I could talk about when it comes to balance and disability. Or even balance and life in general.
I suspect that being disabled doesn't make balancing life and responsibilities and stuff like that any harder than it would be if I were not disabled. I wouldn't know. It seems to make the difficulties more obvious and I know comparing myself to friends who are able-bodied (which isn't always a good thing) that it's very different. I think that if I were to wake up tomorrow and not be disabled I would find the change in issues and problems and perspective as hard as someone who has suddenly become disabled. Because having been lifelong disabled it would be a huge change. A paradigm shift, even.
One of the hardest things for me to balance however is the judgement of whether or not a thing is a disability thing or not. It's led to me being accused of being too "disability centric" at times. And told by someone who has no idea whatsoever how much rubbish they were talking that I need to learn to let go of my disability sometimes.
Recently I took part in a project where you had to phone some people and ask specific questions. I really didn't enjoy it which surprised me. I know some of the others who took part didn't like it either. From what they said it was the fact they weren't being completely truthfully they didn't like. That never even occurred to me. I practically hated it because I felt like the questions I had to ask made me look like a complete idiot and that the people I was talking too would be going "oh well, she's disabled, she doesn't know any better..."
And then it hit me.
The people I was speaking too don't know me. They know absolutely noting about me. And it's over the phone. They don't even know I'm disabled.
That's quite huge because even people who don't know me know I'm disabled. I rock up in a wheelchair and I can't exactly hide that fact. I always find it kinda strange when I realise that people don't know that - it's such a huge, visual obvious part of me. And it's something I'm quite proud of.
Another example from a couple of years ago. Sometimes at CAB I take trainees in with me so they can see what we do. I'm unusual at CAB because of my age not my disability which is something I found very weird to adjust too (although I am the only wheelchair user where I am). And I took this trainee in with me. No offense to them but they could be my parent.
The client kept trying to talk to them not me even when I was asking questions etc. They ignored them and let me do what I was doing (trainees are not allowed to speak with clients when interviewing). And I was convinced I was being ignored because of my disability. At the end of the interview I was saying that to the trainee. Who pointed out that it was because I'm young not disabled. The client had assumed I was the one learning not my trainee. Big lesson learned there.
There are also times when things happen which aren't because of my disability they're just because. But people around me assume it's all down to the disability.
Recently I was having a chat with someone about something I'm not very good at. The fact I'm rubbish at it is obvious. Everyone is in agreement that I find it harder than they or I expected me too. And basically I just figured I was crap at it because I just was.
Then the other person (who basically knows little more than CP = wheelchair for me) made the comment that this could be because of my disability. I said I didn't know. My mum said she didn't know when I asked her either. I could maybe see it as being related to the whole spatial awareness picture building type problems on a very vague level. Ever since then I've been going "am I just crap at this or is it a CP thing?"
That falls into the we'll probably never know category but I doubt I would have made the connection without that conversation.
My depression was around in the background for a long time before I went on treatment. What really tipped me over the edge was three major life events in the space of about four weeks. Two of which were unexpected.
When I was at uni I was originally enrolled on a Sandwich programme where I should have spent a year in the middle of it out at work for experience. I applied for loads of positions and had something like eight interviews. However there were something like 200 people on my course that year (as well as all the people looking for placements from other unis). And there are never enough placements to go around. Something like 30 people from my course alone didn't get a placement. Practically 15% of people.
I was one of them, the only one with a visible disability (whether any of the others were disabled, I don't know). One of the girls I vaguely knew on my course was visually impaired. She got a placement. There's no way you can point blank say "the uni didn't get me a placement because I'm disabled."
And yet when as a result of that I had to change my course somewhat and spent a very stressful few days waiting to here from the university what the new course was etc, people assumed it was all down to my disability. I remember a friend's dad saying to me "if the uni couldn't give you a placement because of your disability they shouldn't have accepted you on the course." and I had to explain that actually, this was not a straight forward disability stopping me situation. And his daughter, my friend? She has CP herself. Having to explain that again and again to different people made a tough situation tougher.
Thinking back now I'm not naive enough to think this had absolutely nothing to do with my disability - I suspect employers looking at me and seeing the chair did have a bit to do with why I found myself in that 15%.
But to have to keep thinking and dealing with the fact that people make assumptions about me and my abilities, capabilities, wants, needs, likes, dislikes, who I am just because I'm in the chair? That's HARD. To have to wonder is it because I'm in the chair or is it just because is harder.
And it's a tough balance for me to come up with. I doubt i'll ever succeed fully and be able to tick that one off the to do list.
But I'll keep trying.
The obvious thing as a CP-er with a topic of balance would be to talk about walking and standing and transferring and the fact that I have very poor balance. I can stand unsupported but only for a few seconds and a physio once described it as "controlled falling" But that doesn't suit me as something to talk about.
There's a lot of other things that I could talk about when it comes to balance and disability. Or even balance and life in general.
I suspect that being disabled doesn't make balancing life and responsibilities and stuff like that any harder than it would be if I were not disabled. I wouldn't know. It seems to make the difficulties more obvious and I know comparing myself to friends who are able-bodied (which isn't always a good thing) that it's very different. I think that if I were to wake up tomorrow and not be disabled I would find the change in issues and problems and perspective as hard as someone who has suddenly become disabled. Because having been lifelong disabled it would be a huge change. A paradigm shift, even.
One of the hardest things for me to balance however is the judgement of whether or not a thing is a disability thing or not. It's led to me being accused of being too "disability centric" at times. And told by someone who has no idea whatsoever how much rubbish they were talking that I need to learn to let go of my disability sometimes.
Recently I took part in a project where you had to phone some people and ask specific questions. I really didn't enjoy it which surprised me. I know some of the others who took part didn't like it either. From what they said it was the fact they weren't being completely truthfully they didn't like. That never even occurred to me. I practically hated it because I felt like the questions I had to ask made me look like a complete idiot and that the people I was talking too would be going "oh well, she's disabled, she doesn't know any better..."
And then it hit me.
The people I was speaking too don't know me. They know absolutely noting about me. And it's over the phone. They don't even know I'm disabled.
That's quite huge because even people who don't know me know I'm disabled. I rock up in a wheelchair and I can't exactly hide that fact. I always find it kinda strange when I realise that people don't know that - it's such a huge, visual obvious part of me. And it's something I'm quite proud of.
Another example from a couple of years ago. Sometimes at CAB I take trainees in with me so they can see what we do. I'm unusual at CAB because of my age not my disability which is something I found very weird to adjust too (although I am the only wheelchair user where I am). And I took this trainee in with me. No offense to them but they could be my parent.
The client kept trying to talk to them not me even when I was asking questions etc. They ignored them and let me do what I was doing (trainees are not allowed to speak with clients when interviewing). And I was convinced I was being ignored because of my disability. At the end of the interview I was saying that to the trainee. Who pointed out that it was because I'm young not disabled. The client had assumed I was the one learning not my trainee. Big lesson learned there.
There are also times when things happen which aren't because of my disability they're just because. But people around me assume it's all down to the disability.
Recently I was having a chat with someone about something I'm not very good at. The fact I'm rubbish at it is obvious. Everyone is in agreement that I find it harder than they or I expected me too. And basically I just figured I was crap at it because I just was.
Then the other person (who basically knows little more than CP = wheelchair for me) made the comment that this could be because of my disability. I said I didn't know. My mum said she didn't know when I asked her either. I could maybe see it as being related to the whole spatial awareness picture building type problems on a very vague level. Ever since then I've been going "am I just crap at this or is it a CP thing?"
That falls into the we'll probably never know category but I doubt I would have made the connection without that conversation.
My depression was around in the background for a long time before I went on treatment. What really tipped me over the edge was three major life events in the space of about four weeks. Two of which were unexpected.
When I was at uni I was originally enrolled on a Sandwich programme where I should have spent a year in the middle of it out at work for experience. I applied for loads of positions and had something like eight interviews. However there were something like 200 people on my course that year (as well as all the people looking for placements from other unis). And there are never enough placements to go around. Something like 30 people from my course alone didn't get a placement. Practically 15% of people.
I was one of them, the only one with a visible disability (whether any of the others were disabled, I don't know). One of the girls I vaguely knew on my course was visually impaired. She got a placement. There's no way you can point blank say "the uni didn't get me a placement because I'm disabled."
And yet when as a result of that I had to change my course somewhat and spent a very stressful few days waiting to here from the university what the new course was etc, people assumed it was all down to my disability. I remember a friend's dad saying to me "if the uni couldn't give you a placement because of your disability they shouldn't have accepted you on the course." and I had to explain that actually, this was not a straight forward disability stopping me situation. And his daughter, my friend? She has CP herself. Having to explain that again and again to different people made a tough situation tougher.
Thinking back now I'm not naive enough to think this had absolutely nothing to do with my disability - I suspect employers looking at me and seeing the chair did have a bit to do with why I found myself in that 15%.
But to have to keep thinking and dealing with the fact that people make assumptions about me and my abilities, capabilities, wants, needs, likes, dislikes, who I am just because I'm in the chair? That's HARD. To have to wonder is it because I'm in the chair or is it just because is harder.
And it's a tough balance for me to come up with. I doubt i'll ever succeed fully and be able to tick that one off the to do list.
But I'll keep trying.
Blogging Against Disablism Day 2010 is coming!
Blogging Against Disablism Day 2010 (the 5th one! Wow!) will be 1st May 2010.
The Goldfish is hosting as usual and details can be found here.
I could say something amazing and fantastic and wonderful about BADD and what it is and what we try to do. But I think The Goldfish has said it all already.
So I will just quote this one small bit and send you over to read the rest:
I've taken part in BADD from the beginning. If I can I hope to get my previous BADD posts up here in the next few days. I really think BADD is fantastic and it's a lot of fun - a great sense of community. But I do hope that one day 1st May will be known as "the day formerly known as BADD" because there isn't any need for it any more..
The Goldfish is hosting as usual and details can be found here.
I could say something amazing and fantastic and wonderful about BADD and what it is and what we try to do. But I think The Goldfish has said it all already.
So I will just quote this one small bit and send you over to read the rest:
Blogging Against Disablism day will be on Saturday, 1st May. This is the day where all around the world, disabled and non-disabled people will blog about their experiences, observations and thoughts about disability discrimination. In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we've made.
I've taken part in BADD from the beginning. If I can I hope to get my previous BADD posts up here in the next few days. I really think BADD is fantastic and it's a lot of fun - a great sense of community. But I do hope that one day 1st May will be known as "the day formerly known as BADD" because there isn't any need for it any more..
Tuesday, 13 April 2010
You know....
You know you've got CP when...
You're looking at the saintary towels in the supermarket and the security guard comes up to ask if you need any help.
I was tempted at that point to ask him which product was better just to see what he would say or do but I didn't.
You know you're fat when...
You ask a member of staff to pass you something in the supermarket, specifying you want the small one and they have to ask you exactly which you mean and then go "that's not small."
To be fair, it was the smaller of the two products.
You know you're a CAB volunteer when...
A friend mentions they can't afford to go out and you immediately start thinking about possible benefits they could claim.
You know you're an advocate when...
You don't get a great response to a question and immediately decide that it's acceptable for now but if it goes on you'll have to say something. And then spend several minutes wondering if it comes to that who is the correct person to speak to.
You know you're a writer when...
You get a letter which starts "Dear Miss Emma C****" and you get really annoyed and think it looks badly on that organisation. Because the correct way to address a letter is either Dear Emma or Dear Miss C**** (although I tend to prefer Ms if I'm honest) Dear Miss E C**** or Dear Miss Emma C**** are BOTH bad English.
You know you're feeling a lot better from your cold when...
You waste time writing a whinging blog entry like the above.
You're looking at the saintary towels in the supermarket and the security guard comes up to ask if you need any help.
I was tempted at that point to ask him which product was better just to see what he would say or do but I didn't.
You know you're fat when...
You ask a member of staff to pass you something in the supermarket, specifying you want the small one and they have to ask you exactly which you mean and then go "that's not small."
To be fair, it was the smaller of the two products.
You know you're a CAB volunteer when...
A friend mentions they can't afford to go out and you immediately start thinking about possible benefits they could claim.
You know you're an advocate when...
You don't get a great response to a question and immediately decide that it's acceptable for now but if it goes on you'll have to say something. And then spend several minutes wondering if it comes to that who is the correct person to speak to.
You know you're a writer when...
You get a letter which starts "Dear Miss Emma C****" and you get really annoyed and think it looks badly on that organisation. Because the correct way to address a letter is either Dear Emma or Dear Miss C**** (although I tend to prefer Ms if I'm honest) Dear Miss E C**** or Dear Miss Emma C**** are BOTH bad English.
You know you're feeling a lot better from your cold when...
You waste time writing a whinging blog entry like the above.
Sunday, 7 February 2010
A Bordering on TMI Update Type Post
Being that it's over a week since I wrote a "proper" catch up type blog entry I thought I better see what I could do about that right now. This entry contains items which fall under the category of TMI - you have been warned!
The goals I wrote about a few weeks ago are... OK but kinda stalled. My TV license is renewed, I've e-mailed or called or spoken to on facebook chat most of my friends I wanted to catch up with but not all. I have looked briefly into changing my ISP but need to do more for that really. I haven't even started my shawl I want to knit. And the no coke and no chocolate thing went really well. /sarcasm. I gave it up Sunday afternoon and was back on it Tuesday lunch time. Yeah. Need to work on that one a bit harder! Although I am pleased that the Monday was a terrible day and I was really upset about something that happened and I felt ill from the lack of my treats but I still stayed strong. Working on my emotional therefore I eat link is probably more important.
I went to the doctors last Tuesday to get my prescription renewed. It was actually only my fluoxetine that needed doing but she's done both. My baclofen dose is now written differently so I get more each time I get a script and I can take it up to four times a day instead of the twice I was taking it. I need to read up on that a little because I've got a feeling it works on building up to get the full effect so taking an extra here and there on bad days may not be the best way to do things. Anyway I've been taking three a day since then.
There was some discussion when I last went that I might have polycystic ovaries. Which is a wonderful condition which little is known about I believe. I am assuming she means PCOS but since then I've done some reading which suggests it's possible to have the syndrome without the cysts or the cysts without the syndrome. Basically I've been skipping periods and then having really long heavy ones and then getting another period really soon (too soon) after the last one and lather, rinse, repeat, basically.
For example I had a period mid October. Didn't get one again until 1st Jan which lasted until the 14th and then got it again on the 31st. That lasted my usual five days only which I was relieved about. I must admit that I was beginning to get concerned that I could end up anaemic. And yes, I do know that this is TMI for a lot of people but 1) I believe in sharing because it could help others (or me) and 2) I find it useful to have this noted down for my records.
Anyway she said the hormone levels I had done in August weren't particularly worrying (she used a different phrasing but that's what she meant) - I was concerned about their validity as I got a period two days after they were drawn but she didn't seem concerned about that. There was some discussion about ways that we could treat it (i.e. regulate my hormones) which would be difficult as I can't take the pill - if you took a list of possible side effects and contraindications of the pill you could cross out contraindications and retitle it "reasons Emma can't take the pill" I have that many of the contraindications.
The suggestion was Noreisterone for so many days between certain days in my cycle each month to make me bleed. But in my situation she prefers a wait and see approach and to see if my losing any weight makes a difference in the situation as she thinks my weight is probably what's caused the polycystic ovaries. That makes sense to me as it treats the probable underlying cause as opposed to just the symptoms (screwy periods mostly).
So I'm to see the nurse again on Tuesday to chat about my weight progress (I set that up before I saw the dr) and then I'm going to be getting on with this with a vengeance again. My Dr did comment that I look a lot better than the last time she saw me and also that I look slimmer too. She also commented that I'm sitting better in my wheelchair which is interesting. Plus on the same day my sister commented that my tummy looked smaller. Progress!
I've played on my Wii everyday apart from one since I got it - I use it for exercise and I really think that's got a lot to do with my current success. I do wish that I had my scales back already though - so frustrated that they broke and I've not heard from them (returned for repair or replacement due to the warranty). But it's not been long enough really to chase it yet.
The games I have are Wii Sports, Wii Sports Resort, Just Dance and Samba de Amigo. I play the Sports Resort and Just Dance the most really and Samba de Amigo is probably the one I play the least. That's hard. It kills my arms. Fun though.
I'm going to be doing some accessibility and/or disability awareness type work with my housing association it seems. In fact I met with my housing officer on Friday and we spent half an hour walking around the estate I live on so I could show her areas where access isn't great. I think the fact I nearly came out of my chair going down a slope at one point (a part I don't go to usually) really highlighted the fact that a better ramp is needed there! Plus she asked about things I hadn't considered too. There are two more things I've been asked if I'll do (but not arranged) and a few more possibilities so that's good. I won't go into how that came about because it's not all resolved but I'll just say that it seems like good things come to those who complain!
I think that's probably about it for now
The goals I wrote about a few weeks ago are... OK but kinda stalled. My TV license is renewed, I've e-mailed or called or spoken to on facebook chat most of my friends I wanted to catch up with but not all. I have looked briefly into changing my ISP but need to do more for that really. I haven't even started my shawl I want to knit. And the no coke and no chocolate thing went really well. /sarcasm. I gave it up Sunday afternoon and was back on it Tuesday lunch time. Yeah. Need to work on that one a bit harder! Although I am pleased that the Monday was a terrible day and I was really upset about something that happened and I felt ill from the lack of my treats but I still stayed strong. Working on my emotional therefore I eat link is probably more important.
I went to the doctors last Tuesday to get my prescription renewed. It was actually only my fluoxetine that needed doing but she's done both. My baclofen dose is now written differently so I get more each time I get a script and I can take it up to four times a day instead of the twice I was taking it. I need to read up on that a little because I've got a feeling it works on building up to get the full effect so taking an extra here and there on bad days may not be the best way to do things. Anyway I've been taking three a day since then.
There was some discussion when I last went that I might have polycystic ovaries. Which is a wonderful condition which little is known about I believe. I am assuming she means PCOS but since then I've done some reading which suggests it's possible to have the syndrome without the cysts or the cysts without the syndrome. Basically I've been skipping periods and then having really long heavy ones and then getting another period really soon (too soon) after the last one and lather, rinse, repeat, basically.
For example I had a period mid October. Didn't get one again until 1st Jan which lasted until the 14th and then got it again on the 31st. That lasted my usual five days only which I was relieved about. I must admit that I was beginning to get concerned that I could end up anaemic. And yes, I do know that this is TMI for a lot of people but 1) I believe in sharing because it could help others (or me) and 2) I find it useful to have this noted down for my records.
Anyway she said the hormone levels I had done in August weren't particularly worrying (she used a different phrasing but that's what she meant) - I was concerned about their validity as I got a period two days after they were drawn but she didn't seem concerned about that. There was some discussion about ways that we could treat it (i.e. regulate my hormones) which would be difficult as I can't take the pill - if you took a list of possible side effects and contraindications of the pill you could cross out contraindications and retitle it "reasons Emma can't take the pill" I have that many of the contraindications.
The suggestion was Noreisterone for so many days between certain days in my cycle each month to make me bleed. But in my situation she prefers a wait and see approach and to see if my losing any weight makes a difference in the situation as she thinks my weight is probably what's caused the polycystic ovaries. That makes sense to me as it treats the probable underlying cause as opposed to just the symptoms (screwy periods mostly).
So I'm to see the nurse again on Tuesday to chat about my weight progress (I set that up before I saw the dr) and then I'm going to be getting on with this with a vengeance again. My Dr did comment that I look a lot better than the last time she saw me and also that I look slimmer too. She also commented that I'm sitting better in my wheelchair which is interesting. Plus on the same day my sister commented that my tummy looked smaller. Progress!
I've played on my Wii everyday apart from one since I got it - I use it for exercise and I really think that's got a lot to do with my current success. I do wish that I had my scales back already though - so frustrated that they broke and I've not heard from them (returned for repair or replacement due to the warranty). But it's not been long enough really to chase it yet.
The games I have are Wii Sports, Wii Sports Resort, Just Dance and Samba de Amigo. I play the Sports Resort and Just Dance the most really and Samba de Amigo is probably the one I play the least. That's hard. It kills my arms. Fun though.
I'm going to be doing some accessibility and/or disability awareness type work with my housing association it seems. In fact I met with my housing officer on Friday and we spent half an hour walking around the estate I live on so I could show her areas where access isn't great. I think the fact I nearly came out of my chair going down a slope at one point (a part I don't go to usually) really highlighted the fact that a better ramp is needed there! Plus she asked about things I hadn't considered too. There are two more things I've been asked if I'll do (but not arranged) and a few more possibilities so that's good. I won't go into how that came about because it's not all resolved but I'll just say that it seems like good things come to those who complain!
I think that's probably about it for now
Monday, 28 December 2009
Christmas Magic
I'm very interested in all things medical and especially in transplants as some of you will know. You also might have seen a few months ago I was including the hash tag #savejess in most of my tweets. This is the story of why. And more importantly, of a little bit of a Christmas Miracle.
Two of my friends had Cystic Fibrosis and had extra time due to transplants. I also know of two others whose lives have benefited through loved ones having transplants (the mother of a once acquaintance and the son of someone I met through CAB training several years ago - I've lost touch with both people now). Those experiences especially with my own friends have made me a strong believer in transplantation.
A lot of the blogs I read are either related to disability or otherwise medically involved. Not all of them, I also read some crafty ones and some diet ones as well as one or two hard to classify ones. But I do read several blogs by people who have had or who are waiting for transplants. And of a couple of people with CF.
One of the people I became aware of some time ago through various different blogs and also a few bits on TV is Jessica Wales.
She has CF and for some reason reminds me a lot of one of my friends who had CF. I've been following Jess on her facebook group and she's been really poorly. She's been on the transplant list since she was 16. 4 years later she's now 20 and had 9 calls where the transplant couldn't go ahead. Given that she was told she had two years to live when she went on the list it shows what a fighter she is. The last update I read last night was that she was seriously struggling and really made me think that this morning I'd read that she'd been one of the three people who died yesterday whilst waiting for transplant (the shortage of organ donors means that 3 people die whilst waiting for a transplant every single day in the UK).
At literally the 11th hour for Jess she received her transplant last night and is currently stable in ITU.
I wanted to share that story because it touched me so much and because even though I've believe in organ donation for as long as I can remember it reminded me of why it is so important.
You can read more about Jess on her facebook group - search for Jessica Wales Rocks My Socks or click this link.
For more information about organ donation you can visit Live Life Then Give Life
Or to sign the organ donor register go here.
Thursday, 23 July 2009
101 in 1001 - Item 81...
Sort out a funky and appropriate bag to live on my powerchair
...has been completed!
I actually figured out a couple of months ago just what sort of bag it needed and how I needed to put it on the chair and got the bag on Saturday just gone. But the story of the bag involves the trading standards story I mentioned a few days ago so I was waiting until I had an answer on that before blogging it. Also a few more attempts at using it to be sure it worked seemed a good idea.
Basically I can't put a regular bag on the back of my powerchair due to design of it (bar as opposed to push handles). And wheelchair bags are shit, basically. Totally don't work for me.
But a few months ago someone showed me a wheelchair bag designed to hang on the side of a chair. Only problem being it was much too small for my purposes. However I was able to try a regular messenger bag on there and it worked. Just needed to find one that I liked and that didn't cost the earth. I'd seen several that would "do". None that were a style/design I really liked and waterproof. So I'd not got one yet and was beginning to think of going for something less perfect.
When I was shopping at the weekend however I remember a small bag shop that was a bit out of the way and I'd not tried yet. Bingo, they had a waterproof plain black messenger bag for a tenner. Perfect. It doesn't scream "Emma!" ye but I have a few possible customisations in mind to make it more "me."
It's working well... I'm in two minds about whether to put a couple of stitches in the strap to make it more secure but at the moment it's ok without that. I've fitted most of the stuff I've got when shopping in it (and that was a relatively big powerchair to sainsburys trip for me).
The shop I got it from however shocked me greatly. And as I mentioned before I ended up reporting them to Trading Standards.
So basically I asked the guy to reach me down a bag to look at and he did. Then I asked to look at another one (the one I actually got) and he told me it was crap, it was a tenner (the first one was £30 I think) and I didn't want to look it. Annoying but not the reason for my complaint.
Decided what to buy and asked "do you take X card?" and he said they did.
But there was a problem... they could move the card machine but had a display of bags in front of the counter and that meant the card machine couldn't get to me because I couldn't get very close to the counter.
The guy working there told me "it's fine" and I'm thinking he'd move the stuff (it wasn't much).
No.
"Tell me your PIN number and I will type it in for you."
Oh My God. So I just kind of gaped at him and went "No."
"well, you can whisper it to me."
"No." In the background another customer walked in. He already knew I was by myself because he'd asked when he asked if I wanted anything reaching earlier.
"Tell that lady your PIN number and she can type it in."
"No."
At that point I started gesturing for my card back and he finally got the message. He moved the stuff (which was all of about three things and took less than a minute) and I typed in my own PIN number.
Jesus wept. I was absolutely astounded that anyone would consider that 1) an appropriate thing to ask a customer and 2) in anyway safe.
I deliberated for a couple of days and in the end e-mailed trading standards. Because it's such a huge safety issue I felt that on reflection I had to. They tell me it's a clear DDA Breach (which I knew already) and they'll be discussing DDA requirements with the proprieter and also referring the matter to the local access officers
Friday, 5 June 2009
Worked up
Twice in the last two days I've been all geared up to be really stroppy and a strong self advocate and really get my point made and things done. Because with both things things looked as though they would be difficult (previous experience for one and information on the website for the other). I was NOT going to take no for an answer. And with the previous experience one (voting not being particularly accessible previously) I'd had several years of being annoyed for letting it go and voting in not fabulous situations with nary a complaint to be seen.
And both things have gone off without a single hitch or without my having to do any stroppy cow advocatey things.
Which, yay. Major yayness
But I'm now in advocate fight mode with nothing to do those things for (yes this is what we might call never happy). I am of course really hoping that nothing comes up for a long while.
I did get a business letter yesterday which needs a reply... and is really poorly written (which is another of my numerous complaints about said organisation most of which revolve around how they hell are they still in business and have they not heard of the term professional?! and are the reason why as soon as said issue is resolved I will have no more to do with them). I'm tempted to channel my raaaarrrr-ness into replying with a corrected version of said letter.
I won't. Even though it would be sooo much fun to do so.
Oh and going back to the things I was worked up about... the second one they said normally they would do various checks and require stuff but they would skip it all for me because my situation is "clear cut."
I was really pleased because I have no problem with their being checks and a system in place but what I objected to was the use of the medical model and the fact they talked about needing forms filled out by your doctor and all that. Apparently however the website is out of date and now they do their own checks (meaning its more of a social model thing and done to prevent people taking the piss). But for me I don't need any checks they'll just do it.
Must admit I didn't think anything of it. Until I told my dad and he went "why is your situation clear cut?"
oh.
Very good question.
What is it about my situation where I ring up and say "I'm not going to be able to manage the new wheelie bins. I'm a wheelchair user and live alone." that makes them automatically say I can have sacks instead and they'll take the bins away and collect from wherever I want? Most of which is what I was asking for (or planning to), some of which (taking the bins away for sacks) I didn't think would be possible.
But more than that, what about all that makes it "clear cut" that I need this and yet others need to have visits to prove it and other stuff? Some situations are borderline apparently and mine isn't.
I suspect it probably comes down to them being overwhelmed by people complaining about the new system coming in this week and doing what I did - managing on the old one but no way of coping with wheelie bins.
From a disability rights perspective however, it's crap. Because for people like me it's great... one phone call and (hopefully) sorted. There is an argument that this is a bit "pity model" but lets not go there. For those who can't manage those magic words "wheelchair" and "live alone" (I suspect more the former) they aren't as deserving and have more hoops to jump through?!
So, in conclusion. Yay for not having to fight for things but them being done. But things aren't always what they seem on the surface.
I must make the point here that I would probably have not made such a big deal of this entry if I had been the one to think "why is it clear cut" rather than having my dad point it out to me. My family are great but I tend to find that I look for disability stuff more than they do (and see it more than they do) so the fact that he wondered why and I didn't seemed huge to me. Of course he was probably just wondering why without going down the whole discrimination pity model and all that jazz path I did.
And both things have gone off without a single hitch or without my having to do any stroppy cow advocatey things.
Which, yay. Major yayness
But I'm now in advocate fight mode with nothing to do those things for (yes this is what we might call never happy). I am of course really hoping that nothing comes up for a long while.
I did get a business letter yesterday which needs a reply... and is really poorly written (which is another of my numerous complaints about said organisation most of which revolve around how they hell are they still in business and have they not heard of the term professional?! and are the reason why as soon as said issue is resolved I will have no more to do with them). I'm tempted to channel my raaaarrrr-ness into replying with a corrected version of said letter.
I won't. Even though it would be sooo much fun to do so.
Oh and going back to the things I was worked up about... the second one they said normally they would do various checks and require stuff but they would skip it all for me because my situation is "clear cut."
I was really pleased because I have no problem with their being checks and a system in place but what I objected to was the use of the medical model and the fact they talked about needing forms filled out by your doctor and all that. Apparently however the website is out of date and now they do their own checks (meaning its more of a social model thing and done to prevent people taking the piss). But for me I don't need any checks they'll just do it.
Must admit I didn't think anything of it. Until I told my dad and he went "why is your situation clear cut?"
oh.
Very good question.
What is it about my situation where I ring up and say "I'm not going to be able to manage the new wheelie bins. I'm a wheelchair user and live alone." that makes them automatically say I can have sacks instead and they'll take the bins away and collect from wherever I want? Most of which is what I was asking for (or planning to), some of which (taking the bins away for sacks) I didn't think would be possible.
But more than that, what about all that makes it "clear cut" that I need this and yet others need to have visits to prove it and other stuff? Some situations are borderline apparently and mine isn't.
I suspect it probably comes down to them being overwhelmed by people complaining about the new system coming in this week and doing what I did - managing on the old one but no way of coping with wheelie bins.
From a disability rights perspective however, it's crap. Because for people like me it's great... one phone call and (hopefully) sorted. There is an argument that this is a bit "pity model" but lets not go there. For those who can't manage those magic words "wheelchair" and "live alone" (I suspect more the former) they aren't as deserving and have more hoops to jump through?!
So, in conclusion. Yay for not having to fight for things but them being done. But things aren't always what they seem on the surface.
I must make the point here that I would probably have not made such a big deal of this entry if I had been the one to think "why is it clear cut" rather than having my dad point it out to me. My family are great but I tend to find that I look for disability stuff more than they do (and see it more than they do) so the fact that he wondered why and I didn't seemed huge to me. Of course he was probably just wondering why without going down the whole discrimination pity model and all that jazz path I did.
Tuesday, 17 March 2009
Access thoughts, things people say etc
Someone said to me yesterday that they thought our town was pretty good for a wheelchair user. I suppose it is, I've not thought of it like that for a while.
And then they mentioned another town about 8 or maybe 10 miles away saying they "wouldn't want to go there in a wheelchair."
To which I said "yeah but you're not in a wheelchair". I find comments like that to be somewhat annoying.
I have a good friend whose parents live in that town, when she is in this country I visit her at their house, I've been loads although not into the town itself for some years. I can't say I remember it being particularly terrible in/for my chair.
I tried to explain that it doesn't come down to whether it's easy or it's difficult. The choice and what it comes down to, ultimately, is whether or not I want to do something. Because what the choice really is is do I do something which may not be ideal in terms of access or disability issues (and which potentially may not be as accessible as advertised in some cases) or do I decide to give it a miss and not take part.
To me, ease rarely comes into it. Or "not wanting to do something in a wheelchair". Because the other point I tried to make was that being in a wheelchair is and always will be all I ever know. And I have parents who taught me not to let it stop me as far as possible.
Examples I used in this conversation include another local ish town. The last time I went there I thought it was a nightmare for my chair. But that was the day of a dear friend's funeral and we were killing time. The combination of the emotions of the day, a new place, not wanting to go far from the church etc probably wasn't a good one. If we went back and I went round the town more I may have different thoughts on the place. Or I might not.
Oxford was another example. When we go to the theatre I go in my manual chair and the old city streets were a bit irritating. Usually I go in my powerchair it handles the potholes and not quite level paving stones etc much better. I said to mum afterwards that if someone said to me "you can go to Oxford and Reading but only use the powerchair for one of them and have to use the manual for the other" I'd always use the power in Oxford and the manual in Reading.
Really I think "I don't want to go here in a wheelchair" would ever come into consideration when it came down to deciding which wheelchair to take or if the choice was between going to X or Y place and there was nothing else that had a major influence on the decision.
But almost always the decision is if I WANT to do something, am I going to enjoy it, can I afford it etc. Obviously there are times when access will stop me or like Sunday when I'll get there and it won't be what I expected. But that doesn't usually bother me because I can be pretty creative ;o)
And then they mentioned another town about 8 or maybe 10 miles away saying they "wouldn't want to go there in a wheelchair."
To which I said "yeah but you're not in a wheelchair". I find comments like that to be somewhat annoying.
I have a good friend whose parents live in that town, when she is in this country I visit her at their house, I've been loads although not into the town itself for some years. I can't say I remember it being particularly terrible in/for my chair.
I tried to explain that it doesn't come down to whether it's easy or it's difficult. The choice and what it comes down to, ultimately, is whether or not I want to do something. Because what the choice really is is do I do something which may not be ideal in terms of access or disability issues (and which potentially may not be as accessible as advertised in some cases) or do I decide to give it a miss and not take part.
To me, ease rarely comes into it. Or "not wanting to do something in a wheelchair". Because the other point I tried to make was that being in a wheelchair is and always will be all I ever know. And I have parents who taught me not to let it stop me as far as possible.
Examples I used in this conversation include another local ish town. The last time I went there I thought it was a nightmare for my chair. But that was the day of a dear friend's funeral and we were killing time. The combination of the emotions of the day, a new place, not wanting to go far from the church etc probably wasn't a good one. If we went back and I went round the town more I may have different thoughts on the place. Or I might not.
Oxford was another example. When we go to the theatre I go in my manual chair and the old city streets were a bit irritating. Usually I go in my powerchair it handles the potholes and not quite level paving stones etc much better. I said to mum afterwards that if someone said to me "you can go to Oxford and Reading but only use the powerchair for one of them and have to use the manual for the other" I'd always use the power in Oxford and the manual in Reading.
Really I think "I don't want to go here in a wheelchair" would ever come into consideration when it came down to deciding which wheelchair to take or if the choice was between going to X or Y place and there was nothing else that had a major influence on the decision.
But almost always the decision is if I WANT to do something, am I going to enjoy it, can I afford it etc. Obviously there are times when access will stop me or like Sunday when I'll get there and it won't be what I expected. But that doesn't usually bother me because I can be pretty creative ;o)
Friday, 30 January 2009
The Vagina Monologues, Vagina Pagina, etc
When I was surfing the blogcarnival site the other day I noticed the featured carnival was Advice for Women from Women. Which is hosted on the blog of the same name.
I've read a few posts from the last edition and they seem interesting. At my first glance of the carnival I thought not much would be relevant or would appeal to be. But this seems to be a very large carnival and as I scrolled further down I did find interesting posts on reusable menstrual products and also on letter writing amongst other things. Hopefully when I have more time I will remember to go back and read more.
And seeing that carnival reminded me that for ages I've been meaning to share the link for Vagina Pagina (literal translation: vagina page).
This is great community over on livejournal and it's own domain as well. It has an absolute wealth of information and advice for women about health and other feminine issues. There is a similar community for men but I don't know it.
It's a designated safe space and you can literally ask any question and get support, advice, encouragement whatever. There's fun stuff too.
You can leave your post open so anyone can read it or lock it so only community members have access. People post for friends too sometimes and occasionally a VP maintainer will post for someone who wants to remain totally anonymous.
I always learn a lot when I go there and I've never felt uncomfortable posting on the few times I have.
Also, going off on a slight tangent I was going through Pasta Queen's "best of section" and came across this entry showing the very fun cakes she made for a friend who took part in the Vagina Monologues. I totally love them but you might not want to click on the link if you have kids around or your boss or something. I love how she celebrated feminity and all things female in the form of cakes!
Oh and finally, most of you will know that I love The Vagina Monologues but in case you haven't see my entries on it, this is the show and the book entry is here
I've read a few posts from the last edition and they seem interesting. At my first glance of the carnival I thought not much would be relevant or would appeal to be. But this seems to be a very large carnival and as I scrolled further down I did find interesting posts on reusable menstrual products and also on letter writing amongst other things. Hopefully when I have more time I will remember to go back and read more.
And seeing that carnival reminded me that for ages I've been meaning to share the link for Vagina Pagina (literal translation: vagina page).
This is great community over on livejournal and it's own domain as well. It has an absolute wealth of information and advice for women about health and other feminine issues. There is a similar community for men but I don't know it.
It's a designated safe space and you can literally ask any question and get support, advice, encouragement whatever. There's fun stuff too.
You can leave your post open so anyone can read it or lock it so only community members have access. People post for friends too sometimes and occasionally a VP maintainer will post for someone who wants to remain totally anonymous.
I always learn a lot when I go there and I've never felt uncomfortable posting on the few times I have.
Also, going off on a slight tangent I was going through Pasta Queen's "best of section" and came across this entry showing the very fun cakes she made for a friend who took part in the Vagina Monologues. I totally love them but you might not want to click on the link if you have kids around or your boss or something. I love how she celebrated feminity and all things female in the form of cakes!
Oh and finally, most of you will know that I love The Vagina Monologues but in case you haven't see my entries on it, this is the show and the book entry is here
Monday, 28 July 2008
Accessibility, Bondage, Awareness.
Sometimes I swear the world is trying to make me crazy (or maybe thats crazier?). And I am so SICK of all this stupid stuff thats been going on lately. On my 101 in 1001 list (linked over in the side bar) I had write three letters of complaints as one (believe it or not I used not to be such a good advocate) and three praising good service. I've sent more than three complaint letters since I set that goal in 2006. But as for letters praising good service? Nary one.
Also, it please me most of the time to be an advocate and stand up for myself and others. I do think it's very important. But just lately I can't help feeling and/or getting the impression that it's making others think of me as something of a bitch who is never happy. Being a constant advocate drains me a little at times too and now is one of those times.
I spent 20 minutes on the phone trying to book my assisted train travel to go to Milton Keynes on Wednesday. The woman was insistant that the way I want to go (changing at Oxford and Coventry) wasn't valid and that I had to get a train to Paddington, travel across to Euston and go that way. I asked her how I was supposed to travel across London given that the tube basically isn't wheelchair accessible. She put me on hold and then came back saying that her colleague agreed with her that the tube is accessible at most stations, I can have help, they do have ramps and it would all be fine. It would also be really, really difficult for her to arrange for me not to go via London.
I told her that as far as I was aware the tube wasn't accessible and I didn't want to chance it, please make the arrangements I had asked for. She suggests I take the transport for London phone number and call them where they would tell me it was accessible and I could do it. If they said it wasn't, and she really did *think* it was accessible, I could call her back. The arrangements I wanted would be difficult to arrange.
This, clearly was bullshit (being I wanted nothing more than I usually had I just didn't want to go to fucking London and it;s stupid tube system) and I pushed her until she made them - she had to do it as two separate journeys - one from here to Oxford and one from Oxford to MK as otherwise her computer would explode or some such rubbish.
Sorted. But then again she tells me the tube IS accessible she THINKS and suggests I call them (she'll give me the number) so I can AVOID the HASSLE if I want to do the journey in the future. At this point I should have told her the only hassle about it was her being so bloody minded and argumentative.
I told her I didn't want the number. And then I went onto the transport for london website. Neither of the tube stations I would have to use to travel across London have full access - they are marked on the accessibility map as having no access in and out of them from the street but you may be able to change trains between certain lines. Also, they don't do ramps or booked assistance - the accessibility page warns that in some places the gap between train and platform can be 12 INCHES HIGHER!
Oh and out of 275 tube stations in London? 48, that's FORTY EIGHT, have step free access from street to platform.
It's a bloody good job I stuck to my guns. But why she couldn't accept what I wanted in the first place.
Maybe I should see if I can get one of those heavy old NHS standard wheelchairs and some bondage stuff (I hear they've got some good handcuffs in there lately!) from Ann Summers. Perhaps if I tie the idiots I've been dealing with lately done so they actually are WHEELCHAIR BOUND they might get it. Or at least stop be so bloody minded and start being more aware.
I deal with the public a lot and I know that the customer isn't always right but clearly what she doesn't know is that when I am the customer I AM always right.
Also, it please me most of the time to be an advocate and stand up for myself and others. I do think it's very important. But just lately I can't help feeling and/or getting the impression that it's making others think of me as something of a bitch who is never happy. Being a constant advocate drains me a little at times too and now is one of those times.
I spent 20 minutes on the phone trying to book my assisted train travel to go to Milton Keynes on Wednesday. The woman was insistant that the way I want to go (changing at Oxford and Coventry) wasn't valid and that I had to get a train to Paddington, travel across to Euston and go that way. I asked her how I was supposed to travel across London given that the tube basically isn't wheelchair accessible. She put me on hold and then came back saying that her colleague agreed with her that the tube is accessible at most stations, I can have help, they do have ramps and it would all be fine. It would also be really, really difficult for her to arrange for me not to go via London.
I told her that as far as I was aware the tube wasn't accessible and I didn't want to chance it, please make the arrangements I had asked for. She suggests I take the transport for London phone number and call them where they would tell me it was accessible and I could do it. If they said it wasn't, and she really did *think* it was accessible, I could call her back. The arrangements I wanted would be difficult to arrange.
This, clearly was bullshit (being I wanted nothing more than I usually had I just didn't want to go to fucking London and it;s stupid tube system) and I pushed her until she made them - she had to do it as two separate journeys - one from here to Oxford and one from Oxford to MK as otherwise her computer would explode or some such rubbish.
Sorted. But then again she tells me the tube IS accessible she THINKS and suggests I call them (she'll give me the number) so I can AVOID the HASSLE if I want to do the journey in the future. At this point I should have told her the only hassle about it was her being so bloody minded and argumentative.
I told her I didn't want the number. And then I went onto the transport for london website. Neither of the tube stations I would have to use to travel across London have full access - they are marked on the accessibility map as having no access in and out of them from the street but you may be able to change trains between certain lines. Also, they don't do ramps or booked assistance - the accessibility page warns that in some places the gap between train and platform can be 12 INCHES HIGHER!
Oh and out of 275 tube stations in London? 48, that's FORTY EIGHT, have step free access from street to platform.
It's a bloody good job I stuck to my guns. But why she couldn't accept what I wanted in the first place.
Maybe I should see if I can get one of those heavy old NHS standard wheelchairs and some bondage stuff (I hear they've got some good handcuffs in there lately!) from Ann Summers. Perhaps if I tie the idiots I've been dealing with lately done so they actually are WHEELCHAIR BOUND they might get it. Or at least stop be so bloody minded and start being more aware.
I deal with the public a lot and I know that the customer isn't always right but clearly what she doesn't know is that when I am the customer I AM always right.
Friday, 11 July 2008
"I touched the wheelchair!"
Fact: I don't like people to touch my wheelchair without my permission.
And earlier today at swimming one of the idiotic people there was doing stuff she really shouldn't do with someone elses wheelchair - sitting in it*. As soon as I saw it, I was mad and I was ranting to everyone "that better not be my wheelchair, all hells gonna break lose if that's my wheelchair." Thankfully we soon realised whose chair it was - not mine. The person whose chair it was wasn't happy but wouldn't go and say anything. The same person also moved my chair later on because she "thought it would be easier for me" and I made her move it back because it was easier where it was in the first place.
There were also a couple of other incidents earlier in the week when people did really frustrating and annoying things (and really wrong on one occasion). Not all directly involving me but all affecting me. And at least one made me want to go "is that not obvious that rah rah rah"
So I'd kind of reached the point in time where I was like "people in general are annoying, idiotic, rude and stupid" and just the less I had to do with people in general the better.
Then my carer came in. I've known her for about three and a half years and she's gotten to be a good friend. We both had had annoying days and compared notes. I was ranting at her about all of this and especially about the whole don't mess with the wheelchair thing. I said "you know I don't like people to touch my wheelchair."
She said "I can't resist" and reached down and grabbed my chair and went "I touched the wheelchair!" Laughing i pushed her arm off. She did it again, ran away and yelled "I touched the wheelchair!!" again.
And feeling better I laughed harder.
*the reason why sitting in someone elses wheelchair is basically a no go in my opinion is this - my Quickie which is my main manual wheelchair cost me £1200+ five years ago when I got it. It is my legs and without it I can't move. It's also set precisely how I need it to be. I don't want it messed with and broken and I know people who have had their wheelchairs broken by others sitting in them when they aren't around and busting them. Obviously, given my size thats unlikely BUT. I also have a memory foam/gel cushion in my wheelchair. It moulds to how you sit and "remembers" If someone else sits on it it can get messed up so the number one rule I was told when I first got that sort of seating was "no one else sits on it."
And earlier today at swimming one of the idiotic people there was doing stuff she really shouldn't do with someone elses wheelchair - sitting in it*. As soon as I saw it, I was mad and I was ranting to everyone "that better not be my wheelchair, all hells gonna break lose if that's my wheelchair." Thankfully we soon realised whose chair it was - not mine. The person whose chair it was wasn't happy but wouldn't go and say anything. The same person also moved my chair later on because she "thought it would be easier for me" and I made her move it back because it was easier where it was in the first place.
There were also a couple of other incidents earlier in the week when people did really frustrating and annoying things (and really wrong on one occasion). Not all directly involving me but all affecting me. And at least one made me want to go "is that not obvious that rah rah rah"
So I'd kind of reached the point in time where I was like "people in general are annoying, idiotic, rude and stupid" and just the less I had to do with people in general the better.
Then my carer came in. I've known her for about three and a half years and she's gotten to be a good friend. We both had had annoying days and compared notes. I was ranting at her about all of this and especially about the whole don't mess with the wheelchair thing. I said "you know I don't like people to touch my wheelchair."
She said "I can't resist" and reached down and grabbed my chair and went "I touched the wheelchair!" Laughing i pushed her arm off. She did it again, ran away and yelled "I touched the wheelchair!!" again.
And feeling better I laughed harder.
*the reason why sitting in someone elses wheelchair is basically a no go in my opinion is this - my Quickie which is my main manual wheelchair cost me £1200+ five years ago when I got it. It is my legs and without it I can't move. It's also set precisely how I need it to be. I don't want it messed with and broken and I know people who have had their wheelchairs broken by others sitting in them when they aren't around and busting them. Obviously, given my size thats unlikely BUT. I also have a memory foam/gel cushion in my wheelchair. It moulds to how you sit and "remembers" If someone else sits on it it can get messed up so the number one rule I was told when I first got that sort of seating was "no one else sits on it."
Subscribe to:
Posts (Atom)
LinkWithin
