Avalon talks about how she has embraced her mobility aid and how she now sees aids as liberating tools that grant us freedom as opposed to a hindrance.
I’ve been told I have a talent for scowling. I’ll do you a favour and save you from seeing an actual picture. But my medical team has had the utmost pleasure of witnessing a variety of scowls when it comes to anything related to mobility aids. Physios, ergotherapists, doctors, nurses. You name it, they’ve seen me pull faces at the mere suggestion of using an aid.
Now, I’m a (mostly) proud user of supplemental oxygen (a portable oxygen converter that allows me to get extra oxygen through a tube that feeds oxygen into my nostrils), a wheelchair, a cervical neck collar (a plastic brace worn around my neck which helps with stabilising my hypermobile spine), urinary catheter (a flexible tube that goes into my bladder via my urethra which allows my bladder to empty), Transcutaneous Electrical Nerve Stimulation (TENS) machine (a machine which sends electric impulses to my nerves as a non-medical form of pain management), and a variety of funky compression garments (tight pieces of clothing which help with blood flow when your circulation is poor). But it’s been a complex, winding journey to accepting my mobility aids, and even slowly starting to embrace them.
When my doctor first suggested I use a wheelchair for agonising pelvic nerve pain, I rolled my eyes at the ridiculous proposal. Me? A wheelchair? I have two, healthy legs that work perfectly well. I don’t need a wheelchair—those are for people who cannot walk because of paralysis or something more serious than what I have. The disability imposter syndrome, which Chelsea wrote an excellently relatable article about, was rife.
But it wasn’t just thinking I wasn’t disabled enough—it was the society-taught idea that mobility aids are for people who are severely, visibly disabled, and that's an unhealthy and dangerous stigma.
Two years after that first conversation with that doctor, as my health continued to decline, I learnt the term ‘dynamic disability’.
Dynamic disability is a term describing conditions where symptoms fluctuate—there is no permanent ‘state’ of disability, meaning you don’t always use a mobility aid and that your disability isn’t always visible.
For me, with Ehlers Danlos Syndrome and severe pure autonomic failure, there were some days where my illnesses were entirely invisible—I neither required a wheelchair for short distances at first, nor did I need oxygen or a cervical collar at all. As time has gone on, my illnesses have become more overt and more severe, meaning I now rely on mobility aids almost constantly. But in reality, even without knowing the term, mobility aids are exactly what they say on the tin—things to help you adapt to your mobility.
You don’t need a medical professional, or anyone else for that matter, to tell you that you can or cannot use one. If it helps alleviate symptoms, then go ahead and use it!
I wish I’d known this sooner, as I would’ve saved myself so many days of pain and would’ve been able to go out and experience things I had to miss out on in their absence.
Once I’d accepted for myself that I’m ‘allowed’ to use mobility aids, I had to overcome the challenge of my internalised feelings surrounding them. I was embarrassed to be seen using them; I felt like a failure for needing to use one. During the summer, my family took me to the beach in my university town and I remember pulling my bucket hat all the way down and putting sunglasses on like some celebrity trying not to be spotted just in case anyone from uni (or, god forbid, my ex) saw me. Why was I so scared of being spotted? If I’d seen one of my peers in a wheelchair, I wouldn’t have thought anything negative of it, so why was I so ashamed?
I think I didn’t want people to see that I was sick because it meant admitting to myself that I was disabled and different. It felt like admitting defeat to my illness, of somehow succumbing to it. I felt like my illnesses had crept up and were slowly strangling me from behind and whilst my life was being ruled by illness, I wanted to at least not show that to the outside world. I didn’t want to accept that this was reality because I felt like I’d failed. I had already lost so much due to illness:my job, mobility, independence, time, friendships. So much, that I think I was scared of being seen as inferior and thus wanted to keep it hidden whilst I worked through processing my feelings. For a while, I hid from the supermarket, university, and social events, because I didn’t want to be seen as just my disability or inferior.
Internalised ableism slowly gnawed away at my mind and soul and I knew I had to unlearn it to adapt to my new reality, even if I couldn’t embrace my aids just yet.
Though I understand the frustration and resentment, you are not a failure for being disabled or using mobility aids. You are not worth any less. You are not defined by your disability, even if society sometimes makes us feel that way. To anyone struggling to accept their mobility aids: I see you and those feelings are valid. But learning to embrace your aids is so liberating and possible.
The road from denial to embracement was far from easy for me. I knew logically it didn’t make sense to resent my mobility aids and I knew that if a friend had confided the same feelings about themselves, I would’ve said “but using a mobility aid doesn’t change who you are, I still love you for being you!”. Yet, I found it hard to accept this when it came to myself. Ultimately, I had to flick a mental switch. The beach, the roaring ocean that makes me feel so infinite, but so insignificant, is my favourite place in the world. Having been in hospitals and stuck at home for months, I’d really missed my happy place. The only way I could get there was by wheelchair, so that’s how I went.
Rather than resenting my wheelchair and instead of perceiving mobility aids as things that limit me, I now try to see them as a tool of empowerment. Instead of being ‘wheelchair-bound’, I see myself as liberated by my wheelchair.
It allows me to go to the places I love, see the people I love, and do so many things I love. Other things that helped me accept my mobility aids are joining a community of other disabled people like RARE Youth Revolution, imagining what a friend would say to me when I was embarrassed of my aids, and personalising your mobility aids. As a close friend of mine said, ‘let’s bedazzle your wheelchair!’ with colours, stickers or, if you’re brave enough, even glitter.
Having grappled with my internal demons about my ideas about mobility aids, I finally felt confident to venture out into the world in my wheelchair. What made it difficult was the few occasions people stared and gawped at me if I were to so much as move a toe. Once, I was in a shopping mall with a friend and stood up by the changing room to go try on a dress. The shop employee remarked, in front of the whole line of shoppers, “Oh, you’re not disabled, your legs work. Why are you in a wheelchair then?” I was so embarrassed (and she received a vicious scowl). These comments that take a moment’s lapse of thought can do so much harm to the people with invisible illnesses. That’s why education is so important, and a general understanding that not everyone who uses a wheelchair is paralysed!
Words can be cruel, even if their speakers don’t intend to be. I’ve had loved ones tell me they
‘can’t wait to see you out of that horrible thing’ and ‘how awful that you have to use that’. Of course I empathise that it’s hard to see a loved one sick or disabled, but it’s actively harmful to use language like that and paint a picture that mobility aids are something to be ashamed about or unwelcome. It’s hard to have a rare illness and it’s even harder to feel alienated from society because of the way you look. I despised my wheelchair for it being the first thing people notice about me, before I have a chance to utter a word or show who I am aside from my disability. But now I’ve accepted that whilst my disability is a part of my identity, I’m so much more than my diagnoses.
My aids free me to go everywhere and experience life more independently. Isn’t that an amazingly liberating gift?
Otherwise I’d be confined to my house or the hospital and would have significantly less independence and ability to do things. My wheelchair has given me access instead of taking it away from me. So whatever society says, I’ll try and roll around with pride and joy.
LinkedIn: Avalon Leiman