How I’m finding things with my motorized wheelchair

Getting a motorized chair has been the best thing that has happened to me for a while! Being able to go out on trips and outings alone without having to rely on family members to drop me off, pick me up, push my chair, is just … amazing, to be honest. I forgot how much I’d come to rely on others to get out of the house and having regained a bit of freedom has felt really good.

Of course, I still do rely on my family but it’s not a terrible thing. Like many disabled people, I do have many moments of feeling that I’m a burden on family, even though they are happy to help. It’s just nice that if I fancy going to the library, for example, when I’m home alone, providing I have the spoons, I can go without having to wait for transport and a guaranteed pick-up.

This week I started my Masters degree in biomedical science, and without the motorized chair, I simply couldn’t have done it at all. I commute about 60 miles, and as my twin sister, who is my main caregiver, works, then of course she can’t be around for me all the time. I was managing to volunteer on my own using the manual chair (with my mum dropping me off and picking me up at the bus stop), as getting off the bus at the hospital where I work and getting into the department is all flat and fairly smooth, but I was still doing more damage to my shoulder by propelling myself. Getting myself around the city for uni was simply something that couldn’t be done.

With the motorized chair, I have been managing much better than I’d imagined, including having early mornings and 7:00am trains. To be able to get about and do things without so much struggle and pain is great and I’d forgotten what it was like, to be honest. Even when someone was pushing my manual chair, it quickly became very uncomfortable and the pain after a full day in it is unreal, but the motorized chair is much more comfortable for quite a long time.

Of course, there are still access issues, because, you know, that’s how the world is. Some of the positives are that I’m managing on the city buses, even if there’s not a lot of space to get round the corner past the driver’s booth, nor to maneuver into the wheelchair space if the bus is busy, but actually I think I manage this better on my own than I did in the manual. The train service in Scotland is pretty impressive compared to stories I hear elsewhere; I only have to book 6 or so hours in advance for assistance, and actually most of the time, it’s o.k. to just turn up at the station and arrange a ramp. The staff have been excellent, and commuting isn’t turning out to be as frustrating as I’d thought.

Things are going well at uni too, especially as the new buildings of my faculty were specifically designed with wheelchair access in mind; the corridors are extra wide, the lab benches are adjustable, etc. I have a campus map with accessible routes and entrances to buildings, although on my first day I did have a chair lift that wasn’t working–honestly, it’s not even a surprise to me anymore, to be honest!

Anyway, I just wanted to say I’m getting on well. Different people have different needs and preferences, but with my conditions affecting my upper body as well, getting motorized has been the best option for me and I have no regrets! (Well, maybe I regret the heightened electricity bill from all the battery charging! :P)

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.

#SamaritansRadar Twitter App – my thoughts on why this is extremely problematic

(CN: discussion of mental health, suicide, elements of self-harm)

This will be another mental health post, this time centered on the Twitter app that mental health and suicide prevention charity Samaritans have launched, called Samaritans Radar. You can read about this app on their website in this link: http://www.samaritans.org/radarpress The basic premise is that a user can sign up to the radar, and it will then scan the Tweets of people they follow on Twitter, flagging to the user if certain keywords are used that imply mental crisis or suicidal ideation. The user can then view their friend’s Tweet and make a judgment call as to whether this requires further action. Sounds good, right? Friends can look out for potentially vulnerable friends and step in when it seems they’re having a crisis. Here’s what I and many fellow sufferers of mental health conditions find problematic about this app. Now, I don’t think I have anything new input that hasn’t already been said by others, but I would like to have my say and add my voice to those of us protesting the issues around this app. I do want to throw in here in case people don’t read to the end that Samaritans is a fantastic charity and offers a lot of great help to people in very acute crises. For many people this has meant they were able to resist a suicide attempt when they might not have otherwise. I’ve read that the app is in no way associated with the volunteers who run the 24-hour phone service, so please do not feel discouraged about contacting them if you need to.

Many of an individual’s Twitter followers are strangers, not friends
The app is based on the Twitter list of the user, not those who may be in crisis. This means that, should I mention suicide or self-harm in my Tweets, any stranger who follows me and also uses the Samaritans app would get an email about this. I find this idea very uncomfortable and invasive, that followers whom I don’t even know would get specific emails highlighting the app’s perception of my mental health state and prompting this stranger to do something about it. You may be thinking that support must be good whoever it comes from, right? Well, no, not really. Support can come from myriad sources, but in general, if I were in a suicidal frame of mind and in acute crisis, the type of help I’d be looking for wouldn’t be from a stranger on Twitter who needed an app to alert them that things weren’t well with me. You might also be thinking “What’s the big deal; they’d see your Tweets if they follow you anyway.” It’s the idea of being monitored by strangers for what they perceive as signs of suicidal ideation, who are then prompted by an app on what steps to take. I think if you need to be altered via an app that I may be in crisis, then we’re not close enough for you to provide the type of help I need, anyway. The app would be much improved if the mental illness sufferer, i.e. the “targets” of this help, were able to provide a definite list of who could and could not be alerted by this app. Close friends and family being alerted of vocabulary that seems suicidal is a much better idea than any potential follower being able to take some form of control over my mental health, an idea which provides a nice segue into my next point.

We must have agency over our own mental health
There is something very unsettling and invasive about the idea of others deciding that I’m suicidal or depressed enough to warrant their intervention and/or the introduction of outsiders without my explicit consent. This is pasted from the Samaritans website, in the link I posted earlier (emphasis mine):

“Twitter’s wider collaboration with Samaritans includes a referral process which works in two ways: Twitter has Samaritans listed within their Help Centre as the go-to organisation for suicide prevention in the UK and ROI. When somebody gets reported as suicidal, the Twitter Trust & Safety team verifies the report and if they deem it accurate, they get in touch with both the reporter and the reported account, to share recommendations and contact information for Samaritans.”

Everyone I’ve spoken with or whose words I’ve seen about this would *NOT* appreciate this. If we are deemed to be suicidal by particular Tweets, when we may or may not actually be acutely suicidal at that moment, someone would “report” this in the name of help and we’d be contacted by outside sources whether Twitter or Samaritans or whoever. This removes agency; we have the right to control over how we deal with our mental health and don’t appreciate this control falling into the hands of strangers on Twitter, who decide that we merit intervention without actually talking to us about it. If you’re not close enough to send me a message offering support or asking how I am, then you’re not close enough to justify the involvement of outside elements. Many of us have different ways of coping with fluctuating severity in our mental illnesses; strangers will not know those nuances well enough and will likely try to involve outside elements when they are not actually needed.

Now, I’m aware that to some extent that the idea is for people who have lost an element of control and may not be able to help themselves in that moment, but you have to remember that these people have entire lives and other contacts, close friends, family, fellow mental health sufferers on their TL. Preventing their potentially imminent suicide probably isn’t contingent on your report if you are an effective stranger on Twitter. You also have to bear in mind that many people without mental illness tend to offer support and comfort via platitudes that actually tend to make things worse, but that’s another post altogether. Maybe I’m overreacting and people wouldn’t go to the extent of “reporting” if they are virtual strangers to the person in crisis. But that doesn’t mean this will never happen. Anyway, the point still stands: Do NOT involve outside elements in someone’s care without at least contacting them first. If you are not a close friend or family member, you will virtually never be justified to involve outside elements without consent, in my opinion.

It’s a “cookie cutter” approach
Using so-called key words and phrases to detect someone’s suicidal ideation is hardly going to be an exact science. People suffering from mental illnesses are a diverse bunch just as any group will be and we have different ways of coping with our health, with changing circumstances and different words we use to convey these issues. Some people are very explicit even when not in crisis, whereas some don’t mention things even if a suicide attempt is imminent. Personally, I think I am less open about mental health in general when I’m struggling, so if I were suicidal, the clue would be that I *don’t* mention these key words. I don’t know for sure; what I do know is that there is no set of clues that a person puts out when they are suicidal. One person’s “normal” might be another’s “in crisis” and vice versa. I know people who might mention that they are considering methods of suicide at a point when they are not in immediate crisis and don’t need intervention. I know people whose key words when they are suicidal are more likely to do with making plans, finalizing something, getting their affairs in order, becoming content or relieved (mostly because they have decided to make the attempt). The app’s approach will not pick up on all these nuances; it will give many false positives and miss many genuine positives.

What people also need to realize is that for mental illness sufferers and mental health advocates, many of these words and phrases are part of our general, everyday vocabulary. I talk about self-harm often, sometimes when I’m doing it/have done it that day, worried I’ll relapse soon, and sometimes when I haven’t done it for a long time. Many of us mention suicide a lot whether we are having suicidal thoughts at that moment or haven’t for a long time. You might say “Well, the user will see the Tweet and realize it’s out of context”, but it’s not as simple as that. If I write “I can’t stop thinking about self-harm”, you have no idea what I mean by that. I could mean I’m fighting the urge from minute to minute and need immediate intervention or I could mean that I’m in a temptation phase where I know I won’t do anything and that it will soon pass. I often have periods of intense fantasy about self-harm and suicide methods without there being a big danger of me actually doing it. Often the imagining itself is a great comfort. So did that tweet need reporting or not? What if it had said “I can’t stop thinking about suicide”?

The potential for abuse
Finally, the lack of privacy concerning the app, which is intrusive and unsettling as it is, provides a potential for abuse. Many people may have a stalker following them or trolls, who would then take the opportunity to harass someone who may already be in a moment of crisis. Also, many people suffer extreme mental distress even in periods where is little or no risk of them actually attempting or committing suicide, and the last thing anyone needs in those periods is being harassed or trolled. Even people with good intentions can make it worse by offering platitudes.

Basically, I and many others feel like they have done very little or no research with actual sufferers of mental illness on Twitter. It seems to have come from “higher up” where they thought this was a good idea without asking the people concerned. The app could be much improved if the people being monitored could explicitly choose a list of those who would be contacted in the instances of tweets suggesting suicidal ideation. Twitter is a place where many of us who suffer from mental illness find we can be open and often already we receive an enormous amount of support. My fear is that this level of monitoring and intervention will make people shut off. I and many people I know have already explicitly stated that we do NOT want any of our followers using this app to monitor our Tweets. If you want to show support to your friends, try sending a message, ask how they are, if they need to chat or vent, if they need support. Many people don’t know what to say to someone in crisis, and that’s o.k. If you are not a mental health professional, then your friends likely don’t expect you to be able to always say the right thing. Sometimes just an offer that you’re there to listen or even just a sending of virtual hugs or a ❤ can be enough. It means we know you care but may not know what to say.

I hope that the better elements of this app can perhaps be developed into something better and it raises awareness of the problems surrounding this kind of thing that people without mental illness may have never considered.

The issues I feel surrounding “ice bucket” and similar “awareness” trends

Many of you have probably heard about this new “ice bucket challenge” trend, which is to apparently raise awareness for amyotrophic lateral sclerosis, or ALS. Similarly recently there was the “no make-up selfie” campaign for breast cancer. I’ll make this point here at the beginning: 1. This post doesn’t concern everyone who did the challenge and donated or shared information to raise awareness. 2. I’m not ungrateful for the money that these campaigns do raise. I’m not just shitting on people who did this, but hopefully some will see the issues behind it that some of us in the disabled community finds and finds uncomfortable. Others do share my views, but everything in this post is written for my two cents on the topic.

I think my first point is that many people are doing this under the guise of “raising awareness”. Naming a disease does not contribute much to awareness, which is so much than knowing a disease’s name and that it exists. If you’re fundraising, then call it that! Fundraising itself isn’t a bad thing, but it’s not the same as raising awareness. For the breast cancer selfies and various other breast cancer campaigns, what does naming the disease tell anyone? I know many people *did* share information, such as information about the disease itself but also how to check your breasts for any changes and so on. This is good! That is raising awareness! Not everyone who has taken part in these trends comes under the group of people simply taking part in a trend and feeling like they’ve done something.

But some do. Day in, day out, we disabled people deal with so-called allies like this, people who make out they’re “on our side” and are fighting the fight with us, but when push comes to shove, they’re nowhere to be seen. When we tell them that something they’ve said or done is problematic, unlike a true ally they switch off from the conversation and take offense, instead of listening, apologizing, and doing all they can to change the way they think about that particular aspect. They are in it for the “ally cookies”; they do a little bit, feel it’s enough, but then when they’re called out, apparently one disabled person whom they saw as rude is enough to have them give up for the entire community. Not exactly an ally!

There’s no doubt that not everyone doing these trends are ableist or false allies. I’m not saying that, and if you think I am, you might as well stop reading right now. In case anyone would like to derail this, I will state here, in bold, that these campaigns *do* raise both money and to a smaller extent awareness. But to me there are broader issues. Most people, if not all, doing these trends have good intentions, but there’s something in there of people getting their kudos for doing something against diseases but then not actually giving a shit for its sufferers right here, right now. There is a focus on treatments and hypothetical future cures–which of course we all want anyway–but then the same people don’t care for the disabled community as a whole around them. And I think that’s why these things make me uncomfortable. I don’t doubt there are people who have done this challenge who have or will still go on to make fun of Stephen Hawking, who has ALS. Many of us in the disabled community will tell you that while we are disabled by our diseases, issues of ableism make our lives more difficult in many aspects, so there’s something off, to me, about people joining these trends to do their little bit for these diseases, but then continuing on with gross ableism and not actually caring about sufferers or the disabled community beyond that.

If you think this is me not caring about research, then you’re wrong. As both a lupus sufferer and an anatomist, I know how vital research is. I know it’s not just millions of pounds going into vague research ideas about a cure that may or may not exist. My issue is not with the researchers, nor the charities raising money for research, nor the people who do care beyond the trends but who also have contributed to them. If you’re still getting this message, I can’t help but feel you’re plugging up your ears saying “la la la” because you feel you’ve done a good thing by contributing to fundraising and awareness; you have. Believe me, I’m fully aware that there may be no cure for lupus, but I know that research is about more than just a possible cure. If there was a trendy campaign for lupus, I’d be grateful, both for the money it raises and for the awareness, even if small. I’ll spell out again that I’m not saying these campaigns are useless, nor that they don’t do what they’re designed to do, again, even if lacking on the awareness side. The issue to me is people thinking that they’re not ableist or that they’ve done all they need to do by joining a trend and giving a few pound to charity. I’m aware we can’t do everything, we can’t campaign and share information and fundraise for every possible disease.

It’s not that the research shuns the living community in favor of a hypothetical cure. It’s the false allies who do, and it’s the false allyship that I have a problem with. It’s a sad fact of life that disease research needs so much money–big pharma etc. is another issue altogether. I guess this whole thing is less about the trends themselves and more about false allies, or people who don’t actually care about ALS but who just want to jump on the latest trend. <strong>If this doesn’t apply to you, then I’m not talking about you.</strong> I’m not saying we don’t want your money either–hell, I’m grateful for research money wherever it comes from, as, cures aside, research leads to new treatments that greatly improve the quality of life for people suffering all sorts of conditions. But remember that supporting the disabled community goes far beyond giving money for research, and if you don’t care beyond the faceless name of a disease and its possible cure, definitely if you’re ableist in any way and would use the fact that you did donate to derail all of these arguments, then just know that you’re not helping the community as much as you think. In any social justice fight, I’m aware that we do what we can and often that isn’t a lot, but I won’t stand for the way so-called allies try to force us to feel grateful for a tidbit, for scraps, while they continue ignoring the disabled community, people who basically say “but I said something good against ableism, you can’t dismiss anything else I said”, and believe me, I’ve had those. It’s not a case of saying everyone has to suddenly become advocates of every disease and that the general public doing a little bit here and there isn’t effective. It’s a case of the people who shoot us down, derail us, basically tell us we’re wrong about our own experiences while claiming kudos because they fulfilled some trend for some disease at some point.

Caveats. (Fairly intuitive, I’d think, but there’s always someone who misses chunks and will shoot me down for being ungrateful.)
1. I don’t speak for all of the disabled community, obviously, and not for those with ALS.
2. Any offense on my part is not geared toward everyone who took part or everyone who is grateful for these campaigns.
3. I’m not saying we can’t all do our little bit and dismissing you because you’re not a full-time disability advocate.
4. I’m not saying that everyone who messes up and says something ableist is a false ally.
5. Finally, what I call false allies is not always people purposefully just jumping on bandwagons and wanting kudos when they know they blatantly don’t care. Often they have good intentions but again and again derail and silence disabled people on disability and ableism in general in favor of their own views.

Some links about ALS:
http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis
http://www.alsa.org/about-als/what-is-als.html
http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm
http://journeyonwithroyce.blogspot.co.uk/
http://thealsexpress.com/my-blog/
http://health.ucsd.edu/specialties/neuro/specialty-programs/als-clinic/als-resources/Pages/meet-patty-blake.aspx