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.

When will my new 2015 life finally arrive?

(TW: self-harm detail)
Oh, readers. I’ve been a bit all over the place still. I can barely remember what I’ve mentioned here and what I haven’t. Thankfully most of my wounds have healed nicely and there are only a few bad ones–actually, the problem with me healing nicely is that I become very disappointed. I get a perverse sense of satisfaction and achievement out of more serious wounds and the scars they leave; then it means later I swing wildly between hating my scars and wishing they were gone and no one would see them to me being disappointed they’re not as bad as they could be… I still don’t know where I am with it all. The last time was quite bad and had me on my hands and knees cleaning blood in the middle of the night in the middle of a lupus flare. I get very dissociated when the harming gets that bad, and so my personal Twitter account is full of fairly incoherent tweets about it. It’s very odd to look back over it when I’m later lucid and see just how “out of it” I was. It was a good thing about my Livejournal account too that I could look back and keep track, although I get very ashamed for writing such things in such states where people can see. But I guess that’s why I have the blog, for the catharsis.
(End TW: self-harm)

So, yes, this is my first proper post of the year. The title is pretty facetious; I’m not one of those people who seem to believe that somehow the change of an arbitrary calendar system is going to sort out my problems, but part of me does find motivation in there to kick myself up the butt and sort stuff out. But juggling physical and mental illnesses together makes it a million times more difficult. Often I seem to find I have the mental motivation but can’t manage physically, or less often the physical energy but no mental motivation. And often I have neither. What ends up happening is that I let my impulses take over and then do something very taxing such as tidy up the room and then have to pay for it for days after. But sometimes something snaps in me and I just have to get something like that done. Once I rearranged the furniture in my room and ohhh, was I in pain for a very long time after that.

Very conscious of appearing hypochondriac, I wonder if there’s an element of hypomania to my depression. It’s often hard for me to tell what’s a welcome reprieve from depression and a “good day/week/etc.” or something more. I know with the Asperger’s, I can tend to very much focus on tasks and find myself going “overboard” with tasks, accomplishing things very quickly without mental fatigue, but when it’s also accompanied by only needing 3 or 4 hours of sleep (when I’m often in bed for 12+), I do wonder. But to be honest, I think this is probably just me having a good day?

And to continue the hypochondria theme… Lupus has been taking a relatively minor pop at my kidneys for a while now. The rheumatologist is keeping an eye on things for now. The levels of protein in my urine have been somewhat on the border of concern, but nothing too dramatic just now that we’ve found. But I’ve been having so much trouble over the last months with urinating; usually I feel a very strong urge to go but when I try nothing comes for a long time. It’s like I can feel the urine edging very slowly through me until it finally reaches the outside world. Often as well I find I can only push for short bursts instead of a steady stream. Anyway, the point of this preamble was that I was reading about azotemia (nitrogenous waste products building up in the blood due to kidney malfunction) and saw something about asterixia. Now I wonder greatly if this is what’s up with my wrists! It’s called a “flapping tremor” and happens when you extend the wrists back. I’ll have to take a video of mine to see what people think. Unfortunately I missed my rheumy appointment last month (I thought it was in January!) so I won’t see her now until May. 😦 I think I’ll probably see the GP in the meantime and get my bloods updated. I’m not too worried about any of it, to be honest. My twin sister knows that renal involvement is fairly common in lupus patients and she’s preparing herself to give me a kidney in case mine fail! (Jumping the gun a bit, haha. I can’t focus on these prognoses myself; I’ll cross those bridges if I come to them. But she’s understandably worried when reading about the prognosis and stats, and she’s quite shocked at how striking the tremor in my wrists is. So if anything I’ll get the bloods updated for her sake as well as, you know, being proactive in my own health…!)

Actually, I tend to be somewhat cavalier about my health. I am notorious for downplaying things and keeping quiet about things, which was part of my motivation for getting a space where I can actually talk about these things! But after it took me so many years to get the lupus diagnosis and being fobbed off by so many doctors has made me feel paranoid about my own concerns. It’s hard for me to find that balance of feeling validated by my concerns about my own body, especially considering every time I’ve approached my doctors with a specific concern, I’ve been right. But this is what insensitive doctors over the years can do to you, I guess.

Unfortunately it’s getting even harder for me to get out the house and do things. With my shoulder getting even worse, often neither sticks nor self-propelling the manual chair is an option for me. Thankfully I mostly have a family member to help as I’m rarely out more than once or twice a week, but for my volunteering which I commute to the next city for, it’s very difficult as I’m on my own. I keep saying how much easier it would be if only my lower half were affected and I could simply bulk up my arms and propel away! I’m so grateful I’ve reached about £600 in my fundraiser though; also, Nina, whom I work with, has offered to give me whatever money she gets back from her company expenses, which has absolutely floored me with her generosity. Lucy, the assistant manager of one of my charity shops, has offered to bake cakes, as I’m hoping to get up some wee local things. If I don’t have the money by September when uni starts, I don’t know what I’ll do. But again, I’ll cross that bridge if/when it comes.

I have a list of posts to write for this blog, and come Sunday, I’m going to start my little weekly goals again, even if it’s only three. It’s not so important to me whether I actually get them all done or not, but it’s good for a general motivator. Happily, my sister and mum did a massive tidy up of the bedroom my twin and I share; I’m so grateful. This means that next month when my sister has time off work, we can work on organizing our things. We don’t have too many things each, but two adults in one bedroom is not exactly convenient for space! I would certainly like to get my desk space set up again and have a place to work on painting. Right now, I’m off to work on Spanish translation, so at least that’s productive! (Also, I’m strongly fighting the temptation to add new languages to my studies, although I already have 11. :/)

Fundraiser for my motorized wheelchair

Hi, everyone. I’ve mentioned my fundraiser before, but I thought I would give it its own post. I will say straight out that I’m aware many of us are pretty broke! I understand not many people have money to give, and I emphasize that this isn’t about pressuring any of my readers to fork out. I truly appreciate any shares. You can find the fundraiser here: http://www.youcaring.com/lupuswarrior I tried to put a widget on here a few weeks ago but it wasn’t working with the plugins and what not (maybe because I don’t have a paid account) and I thought a link is just as effective, right?!

The issues are summed up on the donation page, and most of you will know the case anyway. I currently use sticks and a manual wheelchair for mobility. Because my disease affects up upper body too, this is very hard on my upper joints. The wheelchair is great for giving my hips a break from the sticks, but unfortunately I’m severely injuring my shoulders and clavicular joints by propelling myself in the chair. If there’s no one to push me, and I’m unable to propel myself or use the sticks, then of course I’m house-bound. I plan to return to university this year to do my Masters in biomedical science. It’s been a few years now since I graduated in my anatomy degree, and unfortunately my mobility is much more limited now than it was then. As I’d be commuting about 50 miles, I will really struggle in the manual, which I can barely manage outdoors anyway; I’ve frequently been stuck, and have lost control on hills and gone out onto roads, luckily without accident. Although there are people in the disability service to give help, I will need help in general commuting and also out of hours, not to mention a life outside of uni, and a motorized wheelchair would give me so much independence back.

Please consider sharing the link to my fundraiser with your friends and family. Even if they don’t have pennies to spare, which I understand, they may pass it on to someone who does. I’m aware my chronically ill fellows are likely in similar positions with needing to raise money, and if you would like to send me your fundraisers, I am happy to share them in a master post and on my social media.