The next disability blog carnival has the theme of disability in the media. It's taking place on Thursday.
I had a visit from an occasional carer tonight. and she was like "I was watching TV the other week and all of a sudden you were on it!!"
And I was on TV at the end of November as part of a fundraising contest thing my sailing group took part in.
We won the public vote for the money we had asked for and we will be getting our lift to make the new pontoon more accessible when it is built. But it's all sort of left me with a bad taste in my mouth.
We need the lift to get us onto the new pontoon because of the varying water depths in the reservoir mean that sometimes it will be too steep for a wheelchair and also it gets slippery and also some people can't walk down ramps. That was explained.
And we need the new pontoon because at the moment the volunteers and other helpers have to go into the water up to their chests to launch and retrieve non mobile disabled sailors. We have a couple of kids with things like autism who happily jump out of the boat and get themselves in and out but for most of us your looking at two or three people getting pretty wet. This is because the current pontoon is not stable and an unsteady disabled person struggles and a wheelchair user just looks at it and goes "ooooh no, not doing that." so we launch off of a concrete beach and we soak our volunteers.
The day they came and did the filming they got them to film launching and retrieving to highlight the issues. The (kinda sexy) cameraman also ended up going up to his waist in the water to film it.
One of the other things filmed was my being hoisted into the boat and I was then interviewed sat in the boat. That was a bit of a touchy subject because I only ever use the hoist to sail and only then when I sail one type of boat - which I hadn't actually done since June when I started learning to use a challenger (which isn't exactly hoist friendly but I can get into with two people helping and no lifting!). But no they needed to show me using the hoist so no challenger for me!
The finished piece showed a few of us talking on camera, a group shot and some footage of sailing. Nothing was shown or said about the problems launching which is actually why we were asking for the money for the lift and so taking part in the competition/vote.
Instead the piece started with me being hoisted into the boat and the presenter doing a voice over saying "taking up a new hobby shouldn't be this hard." and that we wanted the lift because that would be the solution to needing the hoist - it was "obvious" to our group apparently.
I actually suspect I won't be the only hoist user for much longer once we have the new pontoon - a few light people get lifted (they wanted to lift me and I point blank refused as I hate it so I use the hoist which they hated until they got to show it off of tv), and with the boats already on the water not sure how that would work but it's not my problem.
When I was being interviewed it was made very very obvious that they wanted me to say something along the lines of "using a hoist sucks." and she kept reasking me "it;s undignified isn't it." "it's a bit of a palavar" etc and trying to make me rephrase my response her way. In the end I said "well yeah, it is undignified in a way, I guess, but I don't see or think about it like that because the choice is not to use the hoist or not but to sail or not and I choose to sail." That got edited into my saying "it is undignified".
Another wheelchair user was filmed being interviewed and you just saw her head and shoulders. Later on you saw her wheeling her chair and a lot of people said after it was filmed and shown that it was a good job they did that because then people would take her seriously when she was talking because they didn't know she was disabled but would later find that out.
The presenter also made a few comments on screen about how sailing is good for disabled because it's a "watery level playing field."
One of the other sailors was interviewed with her mum - only her mums comments were shown with the sailor standing next to her (although this sailor is a little shy she did speak a bit on camera). It was made obvious they were Mum and Daughter. I was very glad at that point my Dad had dropped me and came back later!
We have a sailor with MS who can't really speak. She was shown sitting with one of our volunteers. Who made the comment "XX gets a lot out of sailing; it's what keeps her alive"
I just ended up feeling by the end of our two and a half minute piece that the whole thing had been an exercise in highlighting our deficiencies and making us seem pathetic. I specifically felt that for me they (sailing club people and the TV crew) had wanted to show me as very very disabled which is not how I see myself. Sort of "Look at the poor love using a hoist and doing something that doesn't involve her wheelchair"
It's difficult. We won the phone vote and we got a cheque for £80K or there abouts for our lift. And we needed it.
But I can't help thinking and feeling that a bunch of us were misrepresented, used, even sold out to get it. And me most of all.
An acquaintance told me not to be so stupid when I said that. It just pissed me off more.
If I'm asked on TV again, me thinks I will say no.
Because there's gotta be an easier way then this to highlight disability of competitors in a competition.