I’ve just done a fairly difficult thing – or rather, the first step in a string of significant things that was very difficult for me to even start. I’ve phoned my GP and made an appointment, where I’m going to ask her about referring me for a wheelchair assessment.
This particular decision has been building for a while. I’ve been using a stick on and off for the past couple of years due to issues that I now know were part of my EDS and related conditions (though at the time I was told were everything from anaemia to anxiety attacks to somatic depressive symptoms). In the past couple of months I’ve progressed to two sticks, then saw a musculoskeletal physio and got given a proper pair of elbow crutches. I use one much of the time because not having a free hand is so deeply irritating, only using the two for any walk of any significant distance – and, honestly, one proper crutch is so deeply superior in design and stability to two normal sticks that I wish I’d got one years ago!
And now I’m progressing to a wheelchair. And that’s scary as all hell.
The two things that have specifically set me on this particular course are 1) my recent deeply awful experience at Birmingham New Street Station, and 2) my experience fundraising yesterday at Glasgow Airport.
My experience at New Street – where, despite being given an early lift to the station by an awesome friend, I was forced to walk with my crutch and a heavy backpack, a long distance through a pedestrian area with no public seating, where I was refused seats at various “open air” cafes because they did not open til 9am, where every lift and escalator I encountered seemed to be blocked off for repair and staff, when asked, vaguely waved in possible directions for replacements, and where due to all this chaos I missed my train and had to pay £113 I could ill-afford for a replacement ticket to get home – convinced me that I had reached the level of disability where I couldn’t expect public spaces to be adequately accessible for me any more, and would now need to investigate ahead and double check or book aid in advance. It also left me nearly sobbing undignifiedly in a heady mix of pain, anger and frustration in public behind my book in a Pret A Manger.
My experience at Glasgow Airport, luckily, was much nicer. I joined another awesome pair of friends in shake-a-bucket fundraising for the Scottish Huntington’s Association and my friend who works there asked a colleague on their Community Team to sort a seat for me, as clearly standing for 3 hours would be utterly impossible. That lovely person found the simplest option was to borrow a wheelchair for me from their accessibility service. It was unexpectedly magical.
Part of my condition is POTS – like many people with EDS, I suffer issues with my autonomic nervous system, meaning I often get suddenly dizzy and faint on standing and even find sitting in an ordinary chair with my feet on the floor for any period of time very difficult as my blood pressure plunges. In this simple manual wheelchair, I was able to sit for three hours with the bucket in my lap, thanking the many kind people who made donations, without any of the issues that have made going out so difficult in recent months – no pain, no fatigue, no dizziness, no numbing feet or plunging blood pressure and no being forced into the odd postures putting pressure on various joints that “normal” chairs so frequently force me into. I was euphoric (even before my friend kindly treated us to Chai lattes, which nearly sent me into the stratosphere!).
As soon as I got home, I was googling wheelchair hire and consulting with my various online support groups, who kindly let me know about the NHS assessment service. So I made the appointment, and then lay awake all night alternating between excitement and anxiety (and good old-fashioned pain, of course).
The two main themes of the anxious thoughts chasing each other around my head were on one hand related to other people’s reactions, and on the other related to my own.
Wheelchairs are a strangely persistent symbol of disability in a way that almost no other form of aid is, and thus elicit particular reactions that others do not. Sadly, I am expecting some relatives and friends will make this decision to improve my mobility and quality of life difficult for me. The people who have been asking if I “really *need*” my crutch(es) will very likely go up a huge notch with a wheelchair, and I expect to end up explaining to them – probably repeatedly, at times when I really don’t have the resources to do so – that yes, while I can walk short distances using my crutch without it, it will enable me to get out and about and enjoy activities that I would not otherwise be able to do. So it depends on your definition of “need”, but I will certainly *benefit* from it. I will almost certainly receive abuse from a member of the public who sees me get out of the chair to, say, transfer to a seat on public transport or go into a toilet cubicle with my crutch.
There is a strange perception that wheelchair usage is a binary thing – essentially, that wheelchairs are solely for the use of those who cannot even move their legs, and anyone else using one is “faking”. It is reflected in the common use of the term “wheelchair-bound” as opposed to “wheelchair user” – the idea that a wheelchair could be an instrument of liberation, allowing someone to live a fuller life, never quite seems to compute. Apparently a wheelchair, much like disability itself, is a life sentence into which one is chained for the edification and opprobrium of the public.
Even more irritatingly, the same internalised ableism that has allowed this subject to remain in this false binary so long in public perception kept me awake too. This felt – and feels still – like a crystallisation of the fact that this disability is something that is not going to get better, that my life is now incredibly limited, and that the hopes I have for parenthood, a fulfilling career, feeling like a “useful” human being, and even for the simple dream of not living my every waking moment in pain are increasingly shrinking away. I try and fight them, to remain positive and pragmatic, but having to fight on every front possible – from medical to personal to financial to the inside of one’s own head – wears away at such resolve like unpleasantly scummy, razor-tipped waves on a British beach.
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