A recent post / comment by a lovely lady and then a comment by an old acquaintance bought me to this piece.
The contrast between the two comments couldn’t have been more different. It was so thought provoking and even emotional.
The comments were about the use of wheelchairs and how it affects you.
I can’t pretend to Speak for others who use and need wheelchairs so this post is based purely on my own experiences.
Firstly, there is only one reason that I have a wheelchair and use one… It’s because I have no choice. I had to use one or be forever confined to my bed. The removal of choice was even a hard thing to come to terms with. Like being robbed on a very personal and intimate scale.
It felt like a real betrayal and the first thing I have to say about my experience was that I didn’t want to use a chair. I never thought I would ever need a wheelchair.
After accepting that I would need help to get outside and experience some of the life that was going on around me, I had to accept that I would have to make a peace with the idea of a wheelchair. In fact, at first we bought a beaten up, second hand, cheap chair as I was determined that it was a temporary requirement and that a cure or treatment was coming soon to give me back the life I had… Sadly, I was wrong.
The first thing I noticed was the lack of independence. The feeling of being trapped and vulnerable. It was the cause of many tears and anxious moments…The second thing I noticed was how people reacted to me.
People were either considerate and respectful or rude and judgemental. It was hard as the journey was not only a physical one but an emotional one. Sometimes it was hard to say which one hurt the most.
My husband was very supportive and kind; but it wasn’t happening to him. It is truly something that can’t be imagined unless it is actually happening to you. Until then it is really just a rhetorical topic.
Many people probably think or believe that the world has done a lot to accommodate wheelchair users, but spend a day in a wheelchair and you will quickly discover how naive this belief really is. Even my own doctors office isn’t wheelchair friendly and entering her office is virtually impossible.
There are still many times when I feel vulnerable, exposed and frightened as a wheelchair user and people can make the most breathtaking comments which only makes the struggles harder, and the urge to stay at home even more forceful.
Aside from the chair itself, the thought is that people in chairs must be comfortable and cosy in their very own mobile lounge chair. Nothing could be further from the truth.
The pain of wheelchairs and wheelchair use is very real and the reasons that have you in the chair are still ever present. Hence it can be unbarably painful getting around in a chair; which is almost always taken for granted.
In my years as a wheelchair user I have been treated with intolerance, anger, judgement, suspicion, rudeness, impatience, as though I was intellectual handicapped and sometimes with empathy. Rarely though. That is on top of whatever I may be feeling emotionally at the time. Everyday I wake up I see my chair perched at the end of the bed, but I realise that we still aren’t friends. At best I treat it like a hair dryer, a toothbrush, i.e. a useful tool or a necessary evil. But we are not friends.
I remember the day that the word wheelchair came into my life. I was home, alone, and was trying to use the bathroom. Without warning my legs would not work and I had no power over them. I fell to the floor and was stranded on the cold wooden floor. I called and shouted for help. Crying and scared. My Neighbour must have heard my cries and jumped the fence. At the threshold of my back patio he yelled to me “… Are you ok?” “No! I need help”. I replied. Embarrassed and anxious. I explained what had happened. There was a pause. And he replied “… Sorry but I don’t want to come in. I have a family and I don’t want to catch anything! I will call your husband.” And he left.
After a train journey and almost an hour or so later my husband came home and assisted me. My dog had been laying with me the entire time for comfort as I cried and asked why me!?!?!
So… My wheelchairs are now fixtures in my life and although I have acknowledged my need for them, I still wish I didn’t have to have them. And I guess I aways will…
Each persons experience is different but this was a glimpse of mine. In answer to some of the comments and questions I have been asked over the years. Here are some very quick answers.
Do you really need them? Ummm Yes
Is it for attention and sympathy? Seriously?!…f&@k no!
Are they painful? Yes. It hurts me being in the chair but less than it would without it. And many times my legs and balance means I just cannot walk or move at all… At all.
Can you go anywhere now? No. Very few places are actually accessible and manageable no matter what the brochures say. Even grocery shopping is an exercise in frustration.
Is public transport hard to use? yes! Very!!
Do you get preference and special treatment? Nope. I personally haven’t. Not even when using toilets. People still use disabled toilets and don’t apologize when they come out and see me waiting. They just don’t make eye contact and walk off like I am invisible. And. Even people with walking sticks have cursed at my husband as he has got me out of the car and into my chair for parking In the handicapped park (…yes we have a sticker!)
Are they expensive? yes. They can be. Very. A reliable automatic scooter can cost up the 15k. More than most people can afford.
If you yourself use a chair or are needing one, please think of addressing the emotional and physical concerns and feelings you may have and find others who can empathize during this process. It is important to validate all the steps and feelings you might have. And you are allowed to have as many thoughts and feelings as you wish. But remember … Would you still love someone if they needed a wheelchair? If the answer is yes, than remember you are someone too.
2 thoughts on “The Chair – #life #realities #autoimmune #Disability #movement #challenges”
Discrimination is why no one who lives without a disability can never really understand the choices we make. Things as small as a $0.15 insulin syringe to an assistive driving car are all assistive devices. They all help us live.
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So so true. We look for the syringes too! And we scour the disability products site for second hand and cheap alternatives. 😃