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Liquid sticks to things that never should be seen by anyone. September 27, 2009

Posted by phoenixaeon in LGMD, Mindless rambling that you could do without!, Superhero me.

<Apologies>< Ranting>

Do you know what I hate about being disabled? No, it’s not the lack of mobility and having to use a wheelchair. That is a necessary, and sometimes petrifying, evil. It’s not even the lack of control when I need help with moving said wheelchair.

What really irks me is the way people talk to you.

I am not stupid, I am in a wheelchair. I am not deaf, I am in a wheelchair. I am not useless, I am in a wheelchair. But it doesn’t matter, because I am in a wheelchair.

People think that you can’t make decisions. They think that you can’t comprehend simple conversations, let alone something as complex as how a muscle works, or Mendelian genetics. I am a result of stupid Mendelian hybridisation! I was a pea in a pod that opted for the r-r choice and that is why I am a product of a one in four chance genetic mutation. So there. And yes. I am a mutant, just in case you didn’t catch that the first time round. Stan Lee didn’t invent me. I’d be a pretty useless superhero.

And it doesn’t end there. I really hate the way people speak to me. Sometimes I’m just not there. Sometimes they look at my boobs – well, they’re looking at where my boobs would be if I were a ‘normal person’ who could support myself on my own two legs. And then there are the others who look at me as if I’m an abomination while speaking to the person who is helping me that day. You can see the pity in their face as they ‘sympathise’ with my helper. And they think I’m the wrong one!

What’s made me feel all irksome at the moment, you may ask. Well, it’s the ignorance of people who are supposedly there to help me and their inability to listen.

I’ve been having physio over the past few weeks. I cancelled the session I was meant to have this week because the physiotherapist did not listen to what I had told her, because obviously I don’t know what my body can and can’t manage. She’s the physio, she’d know. The problem with this, I have found, is that she doesn’t actually know how my condition affects me. She even admitted to such a claim, saying that she wanted to bring a colleague with her who know more about muscular dystrophy. Great. So what didn’t she listen to? She asked me how I got up from the bed, so I told her. I explained that when I couldn’t get up on my own I needed to be picked up. She asked how I was picked up, and then asked if there was any other way to pick me up. I explained that we had tried various ways, and how in certain positions – particularly one person either side of me trying to pick me up by having me put my arms around their shoulders – I was likely to be injured because I haven’t the strength around my hips to support my weight while waiting for my legs to work, resulting in my shoulders being almost pulled out of the socketswhile I try to hold myself up. But no, this wasn’t good enough. She took it upon herself to tell me that I was wrong and that she was confident that her and her colleague would be able to get me up. Grrr! Now, if I’d have let them try (by the way, they are both smaller than me heightwise, something else that would cause problems) I fear I would have ended up on the floor. After all, they would first have to pick me up from the stair lift so that I could get into the bedroom. I could only see a disaster happening.

It really makes me angry when people don’t listen. It’s not that I don’t have faith in their ability, it’s that I know my body would fail me. So, when this miraculous technique they have didn’t work and I injured them while falling to the floor, then I would be in breach of health and safety laws. I know this because I have been told before by healthcare professionals that they are not allowed to pick me up in the way I need due to possible injury to their backs. So I’m in a no win situation. I just wish that they’d listen. I know what I’m talking about because it is my body and my ability or lack of.

I know they are trying to help me. I feel bad for feeling angry. But they need to listen and not decide that they know better. I know what I can and can’t do, that’s why you’ll never see me on a skateboard. Or BASE jumping. Even though I’d love to try BASE jumping. Off Niagra Falls. Oh yeah! But that is just an impossible dream. As is people listening to me, apparently.

So, the cancelled appointment has been rescheduled for Wednesday. And they still want to go through with the picking me up thing, so I shall let them. My brother is off work that day and he has said that he will come around and save me if I need it. I really don’t want to do it, but if I need to prove them wrong, well, I shall. And I am hoping that I will be pleasantly surprised and that they will prove me wrong. I would seriously love that to happen. Really. But at the moment that hope is little more than a bedbug nestling between sheets of doubt.

Roll on Wednesday.




1. dadwhowrites - September 29, 2009

If you can’t kvetch about the troubles causes in your life by the stupid and ignorant where can you? A good rant every now and then is very therapeutic. Better than am AL47 and a stack of petrol bombs in the wider scheme of things though not as immediately satisfying, I suppose.

2. picasso36 - September 27, 2009

Ranting is allowed Ally,isn’t that what blogs are for?
You know I think people have a tendancy to do what they know,which is sometimes not always the right thing.Whether a physio,artist,sniper,people like to do what they understand best.Perhaps it’s due to a lack of training or a closed mindedness? The greatest quality IMHO is being able to listen.much more difficult than people realise.
I wonder,and i’m not defending these people,if the ones who talk to you as you are stupid/deaf etc are embarrassed,or feel embarrassed.Not they have a reason to be,you are as complete a person as anyone.But perhaps it’s out of their understanding or comfort zone.possibly they don’t know what to say or how you feel about things.Maybe they think if they treat you as they would anyone you would get mad and say’do you not realise the problems I have etc?’ Of course you want to be treated like everyone else,after all you are the same as anyone else,just with a disability.I just think people don’t know how to deal with it.But again i’m not defending them rather trying to understand them.
Anyway,as far as i’m concerned you are one of the smartest,kindest most supportive friends I have and your disability is irrelevent,well it’s not but you know what I mean-hopefully!
And btw people like at my boobs to,but that’s because I iz a man.:)
Keep your chin up mate.

phoenixaeon - September 27, 2009

Ta Mike. You do know I rant just to rant and not to have an ego massage, don’t you? But thanks anyhow 😀 I need the rant to get clear my head so that I can think straight again.

But yes, I can see where you’re coming from. I think the ‘being embarrassed’ thing is a valid point. But I just don’t understand why most people think that you have a problem with your brain just because you have your own pushchair. I feel very uncomfortable having to say to someone, ‘You know, I’m not dumb. I know about my condition. In fact, I’ve even studied biomed science to degree level.’ It makes me feel like I’m being really hostile. Stupid, but true. (So maybe I am stupid, but that’s not because I’m in a wheelchair!) I suppose it’s the assumptions that people make regarding intelligence/ability to comprehend/ability to hear that irks me.

picasso36 - September 27, 2009

Ally,you have got to be the least egotistical person I know.Yes you rant because you need to,it never occured to me otherwise.

It is all about perceptions I think.All my mates went to Uni,got degrees and when we meet someone new socially and they ask what my degree in.When I tell them I went travelling instead and don’t have a degree you can see their view of me change.Even if prior they thought I spoke sensibly/wisely.It’s not the same I know but…
Thing is,although it does matter,the only people we should really give a sh*t about is the people we know and love and by default they know our abilities/strengths/weaknesses.
The others who look down their nose/feel sorry for us well FU*K ‘EM.:)

3. Louisa Lemon - September 27, 2009

You write very well. I hope the rant helped a little 🙂

phoenixaeon - September 27, 2009

It did. Just a bit 😀

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