There’s many things that are annoying about being disabled. There’s the actual disability, the constant need for medication, the inevitable situation of being dependent on someone when you’re quite happy to be independent, the assessments, the doctors, the hospitals, the decisions between priorities and having to defend yourself against the masses because they live in wilful ignorance…
But there’s one thing about being disabled which annoys me, and the fact that it annoys me causes inner conflict within myself.
And it’s that, because I’m disabled, I’m automatically seen as some sort of expert on all disabilities and the issues everybody with a disability must face, and so it’s been left to me to educate everybody who lacks the knowledge.
On one hand, admittedly, I do know my stuff when it comes to demanding equal rights, wheelchair access, access to social care, and how various disabilities can negatively impact someone’s life style. I might know it because i live it, but I also know it because it’s bloody common sense.
On the other hand, because it is bloody common sense, I don’t see why I should have to spell it out for everyone else when so many issues should be obvious to everyone else.
When I was in 6th Form College, I did a course about the business side of the travel and tourism industry. It was always expected of me to bring up the disabled access and equal rights issue. Nobody else ever thought of it, nobody else gave it much attention. If the subject was brought to the table, everyone else would go “of course there should be disabled access” and never go into the specifics. Some people would even say “It’s a shame there’s no disabled access, but they can’t expect it everywhere…”
There are so many disabled people who turn into advocates for disabled rights. Most of us disabled people know that it’s because if we don’t do it, nobody else will. They’ll try, but they get things wrong.
I’ll give you a couple of examples.
At one of the local hospitals I attend, they had new wheelchair accessible bathrooms put in, because the old wheelchair accessible bathrooms didn’t have much room in them, making them rather pointless. They had two phases of assessment: One person going through all the common demands of access and declaring them reasonable, and then another person assessing the access from the view point as someone in a wheelchair.
Here’s why that didn’t work:
The first person looked at the bathrooms from a carer’s point of view:
Can I help the person in the wheelchair into the bathroom?
Can they safely sit on the toilet?
Can I help them safely get back into their wheelchairs?
Is there enough room for us both to wash our hands?
Are any of the bins/sink/dispensers in the way?
The second person, who was able bodied (The old “We got someone to go around in a wheelchair” palava) saw it from the view point of a perfectly able bodied person being helped by a carer, rather than someone with a disability. There is a distinction, there’s a very big difference and these aren’t taken into account properly.
The second example is frustrating. I’ll give you anecdotal evidence:
When I was trying to travel and needed a hotel, I had to ask every hotel and Bed and Breakfast about access, and most of them would say say “We’ve got good access, yeah!” which would be great if it was as easy as that. If you are ever travelling with a disabled person, or you’re disabled yourself, never take them at their face value. Always go into the specifics of what you might need and see if what they have will be good enough.
One place that was in the best location for the journey went on to say, “Yeah, we’ve got a two bed room downstairs and a wheelchair accessible bathroom. There’s a couple of steps outside, and the doorways are narrow, but we had one of the employees go around in a wheelchair, and he didn’t have no problems!” or words to that affect.”
I asked some more questions, and from what I can remember, the accessible bathroom was little more than a toilet with a lever-grip bar, a low level sink, and for a shower, you could ask at reception for the shower stool. It didn’t sound wide enough for both a disabled person and their carer, nor did it sound wide enough for a wheelchair to fit, so I’m not exactly sure how they expected a disabled person, independent or not, be able to actually get in the shower. And shower stools are hit and miss when it comes to safety in the shower, as there are various shower stools and it depend’s on the range of mobility on if they’re a help or a dangerous hindrence.
Some people don’t have carers, because they don’t need carers. (I used to be one of these people.) Some people have complex disorders that affect range of mobility, grip and space perception, but still don’t need carers.
For someone with those kind of conditions, taking away the option to be independent is more disabling than the disability itself. Because it assumes a carer will be there to do all the hard work, when the disabled person would be able to do it all for themselves.
But this is derailing, and yet at the same time precisely my point.
As a disabled person, I just want to be a person who coincidentally has a disability. I don’t want to be looked upon as some sort of teaching disciple, telling everyone how wrong they are when it comes to these issues. Mainly because it’s a stereotype I don’t want to conform to, partly because even I might get it wrong. I am just one disabled person with one type of rare condition. What might be accessible or inaccessible to me might not be all that reasonable or unreasonable to others with different types of disabilities, conditions and impairments.
But, like I said, I’ve often found that if we don’t speak up and point out the problems, nobody else will.
I think the latest thing that got my goat, which is fairly obvious and common sense living with a disability, is hospital appointments and the need for a carer. I’m alright, I have my family, but it was a very real possibility some time last year that I’d need a carer assistant to go with me to my hospital appointments.
I asked the social services about that, and they said that the only way to gaurantee a carer on days of hospital appointments, would be to get assessed as needing a carer on a daily basis, and then cancelling the days where I don’t have hospital appointments.
It was all either/or, and no way to call up, say a week before the appointment, and ask whether I could have an extra call for this one off appointment. Now I have many hospital appointments, and a direct payment system, so not only does that system not sound too barmy, but also options have opened up a bit. But there’d still be the issue of accessing more money from social services to cover the call. Social care and home help isn’t cheap, after all.
But it just kind of baffled me. Why so black and white? There must be other people who only need a carer on a “as demanded” basis, rather than either scheduled time limited calls, or a full time carer.
Maybe there are, maybe they went to Direct Payments ages ago, and employed a PA directly for those very reasons. This could very well be another one of those things that they overlook due to their main demographic of clients and service users.
Which brings my point back around, really. People concentrate so often on issues disabled people face, from the outside view of not being disabled, or not having that particular disability. They often tell us what we need and what we want, and they don’t listen to common sense.
Which is why, begrudgingly, we need advocates and spokespeople to tell them they’re wrong.
And out of all the disabled loud mouths I know, I appear to be perfect for the job.
(Because I’m the only disabled loud mouth that I know personally…)