Having a disability isn’t usually something you consider, that is until you need to. Be that supporting someone with a disability or having one yourself. I have no right to comment on this from the point of view of being born with a disability, so this is purely from my experience of acquiring a disability later in life.
Something that really helped me come to terms with my autism diagnosis last year was talking about it. Not to anyone in particular, but rather vlogging my wonderings of my ‘quirks’ and working out if they actually are the ‘tism.
Talking about my physical disability though, has done absolutely nothing for me. It isn’t that I don’t want to talk about it, but I do find it hard to share the details as I haven’t really accepted it myself yet. How can I expect others to understand and accept it, if I don’t?
Getting the Autism diagnosis was freeing. It was healing. I would even go as far to say it was empowering because I finally had an answer for why I am the way I am, validation that I wasn’t crazy or difficult. I was different, the world wasn’t made for people with brains like mine and I finally had answers for everything I had ever doubted.
Whereas being diagnosed with a degenerative autoimmune condition that would physically disable me, raised more questions than it answered. In fact, the only thing it did was give a name to what was causing my body to fail me.
Participation in sports was a huge part of my life and even post diagnosis I tried to continue with as much activity as possible. I hadn’t competed since secondary school but was very much involved with aquatics. It wasn’t until summer 2023 that I finally accepted I couldn’t be on poolside teaching aquafit multiple times a week. I would teach a session and try to hide the pain. The ladies would tell me off because I wasn’t the type of instructor that could just call out the moves and stand watching them do it, I did the full set with them from poolside. But they could see I was hurting.
I have partially torn both Achillies (my condition weakens tendons and ligaments) and was told on numerous occasions that if I didn’t stop, they would tear fully. I even had a scan to see if they could give me a steroid injection to help with the pain. They couldn’t, I had 2 sacks of inflammation behind the tendon and an awful lot of scar tissue. If they had injected and it didn’t quite get the right spot, they would have ruptured it, causing lasting damage.
Up until this week I thought the reason I was struggling to come to terms with my acquired physical disability was the impact it had on me with regards to sport and teaching (swimming as well as aqua fit), along side what I can no longer do with/for the kids. That is still a huge part of it, but there is something bigger.
Autonomy.
My acquired disability threatens my autonomy.
Something I have worked my entire life for. Without realising that was what I was working towards. My positive niche construction has allowed me to reach a point in life where things work well for me and accommodate my needs.
Something that is so important for anyone who is autistic.
You may be thinking that realisation must have come from therapy or something like that… nope. It came from Dave. Our dog.
Earlier this week Dave went back to his day care to try another settling session after being castrated. Dave gets a little bit too ‘excited’ at day care and he can be quite rude towards other dogs. He is very much a lover not a fighter! So, we agreed to small steps to build him up for overnight stays. Or so we thought. When we collected him, they told us that day care may not be for him, which in turn would mean he cannot stay overnight.
My immediate response was panic, WTF are we going to do now when we need to go away?! It made me feel trapped. Like I had no control over what we could do as a family as the bloody dog can’t stop humping the other dogs! I said to my husband, ‘that’s it, we’re never having a dog again, we can’t even go on holiday now. What are we supposed to do?’
We haven’t been abroad since our honeymoon (13 years ago). I don’t like traveling. I like holidays in the UK. Most of the places we go to will accommodate dogs. I literally said before we got Dave that we won’t ever be going abroad. It was crossed off the cons list because I had absolutely no intention of traveling outside of the UK.
With all my medical issues no one would insure me anyway!
Making that decision though was on my terms. It wasn’t dependant on anything else, it was me who came to that decision due to not wanting to travel. But as soon as I couldn’t go, I wanted to. I had lost control over that thing, it was no longer on my terms. I was once again not able to do something for my kids. Our eldest has been invited on a trip to Barcelona as a gifted MFL student and due to his autism we need to make that trip with him before hand to allow him to process and understand how it all works. He hasn’t ever been abroad before and if we don’t do that he won’t go.
My husband then annoyingly reminded me that I wasn’t planning to go anyway… he was just going to do a cheeky day trip with him. I mean he has a point, but again that decision was mine to make.
Arguably, this is a very minor thing, especially as I wasn’t planning to go in the first place. My autonomy was still affected by it.
It was after this incident I realised I cannot accept my acquired disability because it has such an enormous impact on my autonomy. It isn’t just about things I want to have the opportunity to do, it’s about not being able to do the things I need to do. Some things can be adapted, but others can’t. Ultimately, I will end up at a point where I have little to no independence and that’s a really hard pill to swallow.
Maybe there is a little irony in it. Having my autism diagnosis empowered me in many ways, but it is also the reason I am unable to accept my physical disability.