Conventional success – an unrealistic expectation for many disabled people

Well, friends, I’ve just had an encounter on Twitter with someone spouting some very awful ableist things, leading me to write a lot of thoughts on my personal Twitter page. I thought it might be a good idea to basically get these thoughts out on here too. It will probably end up a fairly disjointed post about ableism, abled people’s expectations of disabled people, and the justification of internet activism and defense of its critics.

Basically, the person in question claimed in less polite words that disabled people who don’t achieve success have simply given up on it. The only difference between those who do and those who don’t is willpower, I was told. Two words = Helen Keller. Apparently because Helen Keller overcame her obstacles, I was told, none of the rest of us really have an excuse. The person did not heed that fact that not everyone has the same disabilities as Helen, never mind the resources. It’s a given fact that rich disabled people usually manage to reach more conventional success than the rest of us, because they have money for aids and resources that we don’t. (Case in point, I would have fewer problems with my upcoming Masters, mainly because I could have bought a motorized wheelchair a long time ago and moved to a city that offered different courses part-time.)

This person did not heed the fact that failing to find the strength to continue life seeking our pleasures is most often a symptom of mental illness, not laziness. Along with Helen Keller, they used themselves as the holy grail of “disabled people who achieved success”, implying that because some can, the rest of us are simply making excuses for ourselves. We’re often called pessimistic or defeatist for accepting that particular activities or paths are beyond our limits, while it’s actually more harmful for people to cling to the idea that they can do *anything* with willpower and injure themselves, mentally and physically, by pursuing something because society will not allow us to step back and say “No, I can’t.”

Recognizing our personal limits and acting upon them to say “I can’t” is not the same thing as just giving up on everything. In fact, we disabled people often can only get through a normal day with sheer willpower and stubbornness. No, it’s not a miracle that a disabled person left the house–we’re not here for inspiration porn–but it’s a fact that many of us have to put so much more into the little daily things that people take for granted. And for those of us suffering from mental illness, sometimes just literally surviving the day is a success.

But abled people have a very one-sided idea of success, going somewhere along the lines of being functionally independent, making lots of money and having a conventional job. For many disabled people, this is not an accessible path. Often if we do manage to get a conventional job, we cannot work full-time, need plenty of accommodations, and such things. Many of us are always going to need a family member, partner, or friend around to help us out with some things. According to society, these “dependencies” are the result of us not working hard enough for our full independence. I don’t understand why we are not “allowed” to seek help; of course we want as much independence as we can, but independence should not involve stubbornly refusing help for things and making ourselves worse because we feel like we must do every little thing for ourselves or we’re failures.

One thing the person literally said was that we’re at fault because every moment we spend tackling ableism online is not spent applying for jobs instead. Wowee. There are a few points in here that are implied to me: 1. that disabled people are not allowed to have “free time” and hobbies; every moment we’re awake we must be *bettering ourselves*, 2. that internet activism is unimportant, futile, and not a measure of success. I don’t know about you guys, but challenging ableism and changing the views and behaviors of people toward oppressive groups is success in my book!

Sometimes, when engaging with ableists, I do get anxious and/or bitter. It’s often the time I simply block them for the sake of my mental health and no longer engage. But, like today, much of the time I’m perfectly calm and civil. Of course the person I’m engaging usually decides I’m the stereotype of an angry crip and uses my apparent anger at my oppression to dismiss everything I’m saying. While this is problematic even if the oppressed defender *is* angry (we are justified to be angry at our systematic oppression after all!), it also demonstrates the infantilization disabled people go through where, if we say anything with passion or emotion, we’re written off as children taking tantrums. Any mention of our disabilities or the obstacles we face, and we’re told we’re “wallowing in self-pity” and that a negative attitude isn’t going to solve anything. Aside from the fact that we’re justified to have days where we do feel sad and bitter about our experiences, it shows that disability is viewed inherently as something that should never be mentioned. If you do, you’re complaining and whining about your experiences. Those of us who are very open and vocal about our disabilities are often regarded as spending our every moment wallowing in our “misfortune” instead of just shutting up about it and getting on with life.

People often believe that any level of engagement with something can be transferred to the equivalent hours in a job, for example, if someone spends some days a week volunteering, undertaking a hobby, or, indeed, writing a blog about disability or combatting ableism online, then “why can’t you spend that same time doing a job instead?” I don’t think I need to go into too much detail about how oversimplified this is. Volunteering brings so many accommodations that are difficult to find in a paid job, such as extended breaks during the workday, extended periods off, deputizing duties to colleagues, working a very low number of hours a week. Re hobbies, we can spend a very long time producing something that may not seem like much at all to an abled worker. I crochet when I’m able. If my job were crocheting (just as an example, haha), I doubt my employer would be satisfied enough with my rate of output to keep me in the job. We often wake up in the morning with no idea whether we can make it in or not. The companies I volunteer for know this, and I don’t need to panic every time I can’t make it that I’ve let everyone down because they don’t have anyone else to do my job. I have extended periods of time where making it in is the rare exception, rather than not making it in. How many employers would pay me for a few hours a week to take long breaks, not do tasks I can’t manage, and when I’m not even able to turn up half the time? Of course I’m trying to find a position that works for me, but it’s a very simplified view of things.

Re online activism: people don’t realize that this is what many of us do in our spare time, alongside rather than “instead of” working, for one. So to suggest that we are wasting our time doing this when we should be working just reinforces the “disabled people aren’t allowed free time” idea. The other massive issue with it is people suggesting it’s ineffective and futile to even try. Ironic, isn’t it, that the same people who call us defeatist for identifying and living within our limits will say “Don’t bother fighting ableism; it’ll always exist, so you’re wasting your time”. Well, out of magically curing my disability and making the world less ableist, I know which one I actually have a chance to achieve. As I said on my Twitter, “No amount of willpower is going to make me able to walk, grow money out of nowhere, and balance my brain’s chemicals.”

In a nutshell, just because what a disabled person is doing with their life doesn’t fit conventional success, that doesn’t make it meaningless or mean that we’re just not trying. It means that “success” isn’t a monolith, and that different people with different obstacles have different goals in their lives. You don’t know how much or how little they’re trying, and you certainly don’t know how much meaning their lives have.

Latest wheelchair adventures

So, as time goes on and on, I’m discovering more and more how the world is totally NOT adapted to wheelchair users, and that I can’t last much longer with a manual chair, with my upper body also affected by my conditions. It’s hard enough finding the physical strength to push myself, but my shoulder joints in particular are not feeling good, acromio-claviculars (where the collar bone joins the shoulder). I’ve been holding off on steroid injections in my shoulders until I’m desperate, but propelling myself in a manual chair is not exactly beneficial for the poor things.

A few weeks ago when I went for the interview for the RNIB position was the first day I had a proper day out alone with the chair. Usually I have my twin sister there to push me, although I’ll go around on my own in the shops or sometimes I manage around town while I’m waiting for her to get off work, for example. This trip was all on my very own from start to finish, so I was quite nervous how well I’d manage. Luckily, I can walk with my sticks, but obviously it’s not easy to push the wheelchair from standing and use the sticks at the same time, but I did manage just pushing, seeing as (funnily enough) my hospital is up a hill that I could never propel myself up. I managed the bus journeys fine on my own–I folded up the chair and sat in a seat, first to give my poor bum a break and also to sit facing forward on the journey. Traveling backwards is fine for local buses, but not for a whole journey to another town, even without my nausea. The biggest problem with the buses is the pole they have beside the wheelchair berth; it makes it very difficult to maneuver in and out of the space and I often get myself somewhat stuck.

The big mistake I made that day was getting the local bus into town and overdoing things. First of all, I made the journey backwards, and oh, of course, my nausea was so so bad that I spent the whole journey screwing up my face to hold back from throwing up. Lovely! Getting around town wasn’t too bad; I went to the mall to get myself a Subway and to have a look for some Christmas gifts (I know, I want to pretend it’s not happening, but I’d be ecstatic this year if I actually manage to get the few gifts I’m buying sorted well in advance for once!). In Subway it’s always quite tight spaces, even without a chair, not only in between the tables but going around the queue as the standing space is bordered by tables on one side and then the toilets at a very tight corner. Not exactly intelligent design. I got my chair round and when they asked if I would be sitting in, I joked “If I can find a table!” I did hear one of the workers asking another if there was a particular table free as she had a customer in a wheelchair waiting, but I never heard anything after that, so I actually ended up sitting just outside the restaurant area in my chair and called my sister to chat until someone close by finished up and I managed to get a table at a more spacious area.

The mall was generally good, nice smooth floors and elevators as you’d expected. The only issue was some fairly steep gradients; gradients in grounds and floors don’t seem much at all until you’re rolling up or down them, let me tell you! The slightest incline in a pavement can make it virtually impossible for me to keep in control of the chair. One in particular was a challenge to get up, and partway up a child stepped in front of me; I had to keep going or I’d be rolling back down! (Obviously he got out of my way. :P) As for going down inclines, I thought a few times I’d end up on the heels of people in front of me, so I often waited for a bit of free space. Just little things like that you don’t consider would be a problem, and maybe they’re not for many manual wheelchair users with good upper body strength, but they were exhausting for me.

When I was getting the bus back to the hospital in order to catch the bus back home was when things really went to pot! A guy I’d got talking to in one of the shops ended up bumping into me at the bus stop and before long we were chatting again like old friends, which was nice. What wasn’t so nice was him telling me to get a particular bus and others at the bus stop agreeing it would get me back to the hospital. First, I missed the one that came because there was already a wheelchair on it–a third guy came along and had to be turned away too, so he and I had a bit of a moan about it. It’s frustrating that buses will only carry one wheelchair. There must be people who go out with other people in chairs–then they must take extra buses? As the guy was saying to me, they could make at least another wheelchair space, especially as there’s often extra space for buggies which could go into a designated wheelchair space.

Anyway, when I finally got on the next one, I got settled in and then the fare man came to sell the tickets. I asked for the hospital and he just said, “You’re on the wrong bus, mate.” I was like “Are you serious?!”, explaining people had told me this one! He was really helpful and got me off at the next stop and gave me directions to the bus stop I needed. Unfortunately it was up a hill. I could not manage at all and had to push my chair up the hill again. Then when I got the chair onto the bus, I was still standing when the driver started driving and so I went flying! On top of that, when we got to the hospital, I had to wait ages and knock on the driver’s booth to get him to get the ramp because, in his words, “I forgot you were on board, pal”. Charming!!! I should mention that this whole incident with the buses was even more stressful because my sister had told me the last bus home was at 16.10 (which it wasn’t, by the way!).

The same trip to Dundee this week was not as bad because I didn’t go into town, but the bus home did break down, so we had to get onto another one on the motorway. The driver made sure in advance I’d be fine, and when the passengers were disembarking, at least three asked me if I needed any help; one woman offered to carry my backpack. I thought it was really kind, but I got an insight into why so many disabled people find it frustrating to be constantly offered help. I thought, the third person would have heard me refuse the first two, but still asked me as though I’m not sure of what I can and can’t do, which is annoying, to be honest, but I was grateful for the offers. We disabled people very often feel torn between being grateful for offers of help but resenting something in it at the same time. I know people mean well most of the time, but there is an underlying issue sometimes.

Anyway, I didn’t have too many dramatic problems, thankfully, although I really do struggle in the manual chair when I’m on my own. In preparation for returning to uni to do my Masters, I’m setting up a fundraiser page so I can get myself a motorized chair, yay. A manual chair is very stressful on many of my joints due to hypermobility. Fingers crossed! One problem I did have was in Home Bargains, where the wheelchair trolleys were being used by employees to stock the shelves. ¬_¬ I did complain to them on Twitter at least.

But as every day in a wheelchair teaches me again, the world has a long way to do in terms of accessibility.