Death, Dying and Disability: The Three D's

The next Disability Blog Carnival will be hosted later this week by Retired Waif. It's theme is death/spirituality/end of life issues. Which is something I've been thinking about lately and so is an apt theme for me.

Margo, who writes over at Funky Mango's Musings, is doing a PhD on physically disabled people's attitudes to end of life issues. Or some such similar wording. And at the end of the month I'll be traveling to Milton Keynes to meet her and take part in a focus group she's running as a part of her research. I'm really looking forward to it for three four reasons.

1. I get to meet Margo


2. I think this is a really interesting topic


3. There is a very slim possibility that there will be shopping opportunities.


4. I get to leave this godforsaken place and go somewhere much more interesting for the day

I've been talking to a few different people about going to take part the focus group. Their reactions have for the most part surprised me.

Some other CAB people because I swopped days so I could go. One person wondered why a physically disabled person would have different views to an able-bodied person. She also suggested that someone like me who has been lifelong disabled is not a good person for the research because how would I know how being disabled affected my views. It's an interesting point but I found the whole conversation frustrating because how could the views of disabled and able-bodied NOT be different?!  I tried to explain but I don't think she understood, I probably could have done a better job but I'm not sure it would have made a difference.

That was just a very brief conversation and wasn't overally surprising to me. Different people have different opinions and levels of "getting it" when it comes to disability and that was sort of what I would expect from that person - someone who I don't know particularly well and who I've never discussed disability, disability identity, and disability culture with.

My Mum also wondered why you would assume that the views of a disabled person would be different to an able-bodied person but as soon as I started explaining it she got it and got it properly.  I do have to say that I had a harder time with her wondering than with the above person because if it can be so obvious to me but not to my own mother who has spent the 26 years of my life so far walking the disability path alongside me then just argh.  But I actually think now it was more of a case of not thinking about it because as soon as I talked about it she got it.  And I know how hard it can be to think on the fly so to speak - particularly about things that are so "big".

Another CAB person on another day made the comment that she's noticed that attitudes to end of life issues do vary between disabled and able-bodied people. Her comment was that everyone around her age is scared they will get Alzheimer's - the inference there I think being that disabled people are less worried by such things and also it seemed to be implied that euthanasia is viewed differently by the different groups. The interesting thing here is that this is someone I know better - someone who has seen me struggling with access and all the other crap that can come with a disability. And also is the person who first mentioned Ashley X to me if only in passing.

I tend to agree with that opinion. As a friend who has ME and who has been in a wheelchair at least as long as I've know her (seven years) put it - we know that health isn't everything. I might not go so far as saying that health isn't everything because I'm not sure health really comes into my views. To me the whole thing comes down to the validity of disability as a way to live.  Ugh, that's a horrible sentence.

Anyways, what I was trying to say (I think) is that a lot of people, doctors and otherwise wonder how we can have our disabilities and be happy, how we can say that we love life, enjoy it etc when we spend our lives on wheels or with other "differences".  Which is why we end up with cases like Brent Martin, Ashley X and Katie Thorpe and even, god damn it, Terri Schiavo.

As long as my people are being treated and abused and even killed then my views on The Three D's will always be different to those who don't live this sort of life.  They have to be.  Because no one who isn't disabled can understand how things are and why that sort of treatment is truly wrong.

Two final things:

I read Souvenir by Therese Fowler last week.  It's a story about love and life and it's brilliant.  But it's also, inadvertantly it feels, a story of disability.  The main character is dx with ALS part way through the book and struggles with the idea of suicide and euthanasia throughout the book once diagnosed.  She is a doctors (the main character, Meg, I mean) and at one point comments that most doctors are in favour of euthanasia.  It's a brilliant, brilliant book and one I want to write more about here.  But that's a scary, scary thought.

and this is a great quote that I've shared here before but which seems apt for this entry and this carnival.

Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, 'normal,' and sane....If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.

~ Susan Wendell, author of The Rejected Body: Feminist Philosophical Reflections on Disability