A woman asked me an interesting question the other day. She asked me whether I consider myself to be disabled.
The thing is being “disabled” is often misunderstood, people assume that being disabled and you can’t do anything. In reality being disabled means that you need reasonable adjustment in order to be observed lead a normal life. I definitely fall into this category, I sprain my thumbs on a regular basis which means that I have to be very careful when doing a lot of normal everyday things. The last injury I got was from trying to open some packaging, it with that annoying plastic crimped edge packaging that you get kids toys in at Christmas. I very carefully cut all of the crimped edges off and yet I still managed to pull a tendon in my shoulder and sprain my thumb.
I do quite often get funny looks from people when I mentioned my joint condition because I cover it quite well. It’s not visible anyway but I don’t talk about how much pain I’m in and I don’t talk about how exhausted I become. I think the problem and lies in the public perception of disability often means that you have to be completely incapable to register on the disability spectrum.
I don’t regard myself as disabled really because I can do almost everything, however I do declare my joint condition as a disability on job applications. I think this is a very important thing for me to do because even though employers are not allowed to discriminate against me because of my joints, if I went into a job without them knowing about my joints and then I became injured, I could not really expect them to understand.
I suppose it depends on how many adjustments you have to make in order to live a reasonable life, so I thought I’d list a few:
- I decant my shampoo and conditioner into pump bottles because I can’t squeeze normal shampoo bottles.
- I wear wrist supports and thumb supports to reduce the chance of sprains.
- I hold spatulas and cooking implements differently to use the pressure in my wrists.
- I used dictation software and type wherever possible to avoid my overly tight pen grip dislocating my thumb.
- I use a tens machine, hot water bottles, hot showers, massages and over-the-counter painkillers to relieve my pain.
- I have to use a suitcase to carry groceries back from my local store because I can’t carry them in normal carrier bags. I admit I am a little too vain to use a grocery trolley.
- I wear orthotic inserts in my shoes to reduce the incidence of sprains and only where sensible footwear (within reason… I do occasionally wear kitten heels to feel pretty). I pretty much live in my trainers.
- I can’t walk for long periods of time because my back can go into spasm and the tighter my back becomes the harder it becomes breathe, as the tense muscles pulled down on my rib cage.
- I also can’t lift heavy things or things from high above my head and so have to use stepladders and reduce the weight of things I’m carrying by splitting them into smaller loads.
Now I don’t know if this makes me “disabled enough”. I’ve asked for advice about this and hypermobility syndrome is not classified on its own as a disability, as far as I can tell. It is often referred to as a manageable condition, but even the best managing of us bendy folks will have a flare up every now and then.
I think the trick lies in talking about my condition to as many people as I can. It’s not just being bendy, the exhaustion and anxiety and pain they go along with it make HMS a very difficult condition to live with. Being constantly told that I am “fine” or considered able-bodied when on days I can’t reach the floor to do my own shoes is not right. It’s not like I’m asking for disability benefit or huge amounts of funding, just a little consideration. This does result in some people assuming that all I talk about my condition, which is absolutely not the case. At the moment I remind myself a bit of Adam Hills on “The Last Leg” during the Paralympics where he was getting all excited about little things that he could now talk to people other people with prosthetics about. I met some bendy people and the first question I asked them was if their fingernails are bendy and soft, and if they break easily. This question restrict see with a chorus of “Yes! Absolutely!” And I got a good few nail hardeners is recommended to me, with one person even resorting to false nails. It’s quite exciting to not feel lonely anymore.
So back to the original question I suppose: Am I disabled or am I not?
I would consider myself to be disabled in as much as I have to really think about the way I live my life to prevent myself from being injured. If I didn’t go through hours of physio then my condition would degenerate so quickly that I would probably need significant assistance in my everyday life.
Just because I am good at doing physio and I take care of myself doesn’t mean I’m magically cured, and I still need a small amount of help and a bit of understanding.
I promised that this blog wouldn’t be a whinge-filled irritation, so I promise my next few posts will involve more fun things, but it’s been quite cathartic to finally get this off my chest!