Clara and I were in Durham, ON at the Common Pulse Festival this past weekend, where we developed this art piece entitled “Enjoy Your Disability.”
Author: Jeffrey Preston
Born with a rare neuromuscular myopathy, Jeff has spent his life dedicated to advocating for himself and others with disabilities. With a PhD in Media Studies from Western University, Jeff's research focuses on the representation of disability in popular and digital culture. Jeff is currently an Assistant Professor of Disability Studies at King's University College @ Western University in London, ON.
This past week was the 26th Annual Society for Disability Studies Conference, a gathering of academics from around the world who are working within the field of disability studies to meet, connect and share their research. This year’s conference was of particular importance as it marked the 50th anniversary of Erving Goffman’s text Stigma: Notes on the Management of Spoiled Identities, perhaps one of the most important texts used in early disability studies. While I wouldn’t claim that Goffman was the founder of disability studies, I do believe that the field of disability studies, at least not in its current incarnation, could not exist without the work of Goffman providing such fertile ground of criticism and exploration all those years ago. I met some amazing people and sat in on some spectacular panels, with topics focusing largely on subjectivity, biopower, and the emergent fields of Mad and Autism Studies. I also had the chance to participate in a media-focused panel with three other lovely academics and delivered a short presentation on some of my doctoral research. On the whole, the conference was both illuminating and energizing and I can’t wait to see everyone again at next year’s conference.
See you in Minneapolis!
Categories
The (prom) politics of pity
Growing up with a disability, I have always had trouble navigating social situations. I learned at a young age that people would treat me differently simply because I was in a wheelchair. While some refused to engage with me because of their discomfort with disability, mostly I just found people to be overly optimistic and celebratory, where accomplishing simple day-to-day tasks would be met with cheers, awards and assurances of my bravery and courage. And while perhaps graduating elementary school was the pinnacle of human accomplishment, I couldn’t help but notice that I was the only one receiving this treatment, despite the fact that I was but one of thirty graduating students that year. These other students, “normies” as I call you people, would receive no special awards, would not have newspaper articles written about them, and would not be celebrated as heroes for accomplishing the same thing as me. These students were merely doing what was expected of them, something most of us will accomplish, and apparently there is nothing particularly impressive about that.
While this excessive praise certainly helped boost my ego, it also made it quite difficult when socializing because I was never sure if people were being genuine with me or not. Worse still I remember questioning in that moment if anything I had done was really that remarkable. I was left wondering whether I had ever really done anything significant in my life aside from simply being disabled. Suddenly everything I had done seemed meaningless and I could not tell whether people were really proud of the things I had done or if they simply pitied me—this is some pretty heavy stuff for a teenager to interrogate. As I got older I learned to stop worrying so much about what others thought of me and simply do things that make me proud.
Although acceptance of people with disabilities is certainly increasing, a recent article published on the front page of the London Free Press reminded me a bit of the good old days. On Wednesday, June 5th in a story entitled “A night fit for a king,” Londoners learned of a young man with a developmental disability who was crowned king of his prom for, what appears to be no other reason than having a disability, as the article does little to tell us anything about the individual in question aside from the fact that he’s disabled. This is not something unique to London, as a quick search of Google reveals hundreds of high schools across North America have been electing intellectually disabled students as prom king and queen over the past few years, events also covered as headline news in their respective local media (like here, here, here, and here for example). The real question for me, though, is whether or not this is really “news.” Do any of the other prom kings and queens get front-page coverage? I think you may see the problem here.
While I’m sure the students in London, along with the kids across North America, have the best of intentions with this gesture, simply trying to do something nice for someone they perceive as being hard done by, we cannot ignore the reality that these actions are often imbued with a sense of pity and paternalism all too often faced by the disabled in our day-to-day lives and this practice is made even more degrading by the fact that it is covered as headline news. Worst still, these articles almost never provide any context for why the individual was elected prom king or queen. The result is that these articles then seem to revolve around how “generous” it was of the attractive person to take the disabled kid to prom, as just friends of course, and how “great” it is that the student body subsequently voted them king and queen. Ultimately, the story is not even about a disabled student, but actually about how considerate the student body was for putting themselves aside and bestowing this honour on the poor and needy.
The intention here, admirably so, is to try and make life a little easier for the disabled. These students have grown up being told that life is tough for the disabled and that everyone has the responsibility to help those less fortunate. And while helping the less fortunate is indeed a noble and worthy cause, voting the disabled as prom king or queen is tokenism at its worst and does not make our lives fundamentally better or easier. If you legitimately want to make an individual with an intellectual disability’s life better, for the long-term, then offer them friendship, respect, and compassion. Not pity. Inviting these individuals to prom, and voting them king/queen, does not make up for years of insufficient academic and social supports. In fact, this media circus distracts from the real structural changes that need to be made and let us feel as though this one symbolic gesture absolves us of the responsibility of working toward genuine inclusion. Rather than encouraging our youth to just treating these individuals like royalty for one day a year, why not treat them like human beings every day of the year?
UPDATE: I was just informed the LFP actually published a near identical story, two years ago, about a different school in London (but the same program). You can see it at: http://www.lfpress.com/news/london/2011/06/21/18316356.html
This afternoon I was invited to deliver the keynote at the “Face-to-Face” wrap-up luncheon by an old friend, David Robbins-Singh. David and I met several years ago at Easter Seals Camp when he participating in a youth leadership program I was helping to run.
Face-To-Face is an annual program designed to develop employment opportunities for disabled residents of Windsor, Ontario and is an innovative effort to break down the linguistic and interpretive barriers preventing the integration of the disabled into mainstream society. There is no better way to break down the stigma around disability than by getting people with disabilities into the workplace to show the amazing things they can do when given the chance. I met some amazing people today and am really encouraged to see how many businesses in Windsor had jumped on board. Hopefully the participants found the program fulfilling and will have success in the near future retaining fulltime employment.
Great day, all-in-all, and a very special thank you to David for inviting me!
Since the early stages of the AODA, a key pillar in making Ontario fully accessible has been to ensure equity in the hiring process. I was given a reminder of why these measures are so important earlier today when an odd reference check came across my desk from the Toronto Zoo. As you can see from the reference check form, attached as a PDF here, the Zoo concludes its otherwise routine check with a peculiar question: “Do you know of any special interests, qualities, experiences, or disabilities of this applicant that would be helpful for us to know about?”
Does this constitute discrimination in the hiring process? It is hard to say. Because of how the question is phrased, specifically being clustered with otherwise positive attributes like “special interest, qualities, experiences,” perhaps the Zoo is operating on some sort of internal affirmative action programme and is merely attempting to bolster the diversity of their staff. But regardless of intention, it should be apparent that this type of question is extremely problematic, if only because it is requesting a 3rd party to potentially disclose confidential medical information without the approval of the applicant.
While I’ve never encountered any legislation that speaks to reference checks or gathering information on an employee from a 3rd party, the Ontario Human Rights Code is quite clear about what you can and cannot ask an applicant during the hiring process. Both the Code and the AODA’s employment standard state quite clearly that discussions of an applicant’s disability can only revolve around the needs for accommodation and only if the applicant brings it up first or if a conditional job offer has been made. The Code then goes on to state, quite clearly, that “[a]ll other questions about an applicant’s disability are prohibited” (as seen here).
What is at stake here, and why this type of questioning is wholly inappropriate in my opinion, is that a qualified applicant could be blocked from this opportunity based on disclosure from someone other than the applicant. In some ways, this almost feels like an attempt to contravene the Code by gathering information without the applicant knowing. Worse still, the applicant could be discriminated in the hiring process without ever being able to explain their specific situation to the employer. Even if the disability benefits an applicant in the hiring process, disclosure must always be in the hands of the person with a disability, if only because of the complexity of these issues. Ultimately, the disabled population is spoken “for” too much as it is, which is part of the reason these negative stigmas exist to begin with, and so it is important to give people the opportunity here to speak for themselves.
All-in-all this is an unfair practice and I would implore the Toronto Zoo to eliminate this question from their reference check process.
As you may or may not know, I’m currently in the midst of the long recovery process from a very scary hospitalization. What started out as a small cold about a month ago escalated into something far more serious, leading to a 10-day hospitalization in the ICU at University Hospital in London followed by weeks upon weeks of bed rest at home as I slowly regain my strength and energy. Laying in the ICU one night, awaiting sleep to come after a hard respiratory physio session, I decided this experience didn’t have to be all horror and awfulness — there were lessons to be learned and knowledge to be imparted afterwards. So, for your viewing pleasure, here are some things I learned over the past month on surviving an encounter with catastrophic illness.
1) Nurses are your greatest allies.
Far too often, patients take out their anxiety and frustrations on their nurses, simply because they happen to be closest people around. This is, of course, the wrong way to look at it: when in the hospital, your closest and best friend in the whole wide world is your nurse. I think people sometimes confuse the nurse with “authority” because it is their job to dole out whatever punishment the doctors have bestowed upon them, however, they are also the people who can make your stay far more comfortable. Treat your nurse with buckets-full of kindness and respect and always, always, try and make their job easier. If you do, they are sure to shower you with some pretty awesome rewards like saving snacks for you off the meal cart and helping you get custom food ordered for your future meals. Hate orange jello but love vanilla pudding? Your nurse can make that happen, if you ask nicely. But the benefits go way beyond just food, as nurses often have access to insider information, like discussions happening between doctors that you’re not privy to, so building a friendly rapport with your nurse can be hugely beneficial in the information department. Lastly, these are people who will treat you with near-unlimited kindness and converse with you when you’re lonely, provided you treat them with the same respect. Take care of your nurse and they will take care of you 10-fold. Guaranteed.
2) Doctors are humans. Very intelligent humans, but humans none the less.
I’m not going to sugar coat this: doctors make mistakes all the time. This is not necessarily a reflection of my time spent in the ICU, but a simple reality. Doctors are faced with making serious decisions with limited (and sometimes flawed) information at a moments notice with tons of patients every day. It is no surprise that they will make mistakes from time to time, whether it be because they forgot a minuscule detail or you have not been fully open and honest with them about your symptoms. But rather than just getting angry or frustrated, why not make the doctor’s life a little easier? The whole patient/doctor relationship works best when the two of you are working together, as a team, as opposed to the doctor simply diagnosing you from the notes on the chart. Be sure to tell them everything that’s going on, even if you don’t think it is important. Also make sure to provide history (even anecdotal) to explain symptoms so they don’t go trying to fix the wrong thing.
This is really where self-advocacy in the hospital becomes so important — if a doctor tells you something that doesn’t sound right, politely challenge them and try providing additional information to steer them back in the right direction. Accepting 100% of what the doctors tell you can be problematic, especially when the cure is sometimes worse than the cause. At the same time, contradicting and fighting the doctor at every turn will likely just annoy them and, honestly, do you feel like helping people who annoy you? It’s a delicate balance, for sure, but working with the doctor is infinitely better than working for them.
3) Life is systems within systems — learn to not just to navigate them, but to manage them.
Something I learned real quick upon my release from the hospital is that I was entering a world of complex and overlapping systems that rarely work how they are designed. For me, this meant attempting to synthesize attendant care, nursing visits, family support, equipment purchases, increased training, and trying to beat the illness all at the same time. Anyone who thinks they may be looking at chronic illness or extended hospital stays in the future will really benefit from spending some time developing their managerial and organizational skills before catastrophe hits, when you have the energy and focus to learn, rather than scrambling to put it together in process. There are tons and tons of books and courses and seminars offered through your local library on the subject (even if it’s more focused on managing a business or organization), so look into it and try developing these skills. I found it to be hugely important.
4) There is no I in “team,” but there is in “live.”
Take responsibility for your health. This is something I fear I hadn’t been doing enough of leading up to the illness, which could be a contributing factor to the length of my recovery. The problem is that we all want to live beyond our limits…in fact, on a daily basis we are challenged (and sometimes ordered) to do just that. On the one hand, it is urgently important that we identify what our limits are (whether it be physically, emotionally or intellectually) and then actively work at living within those guidelines. As the saying goes, a candle that burns brightest often burns out the fastest. But on the other hand, we need to admit to ourselves, and I mean genuinely deep down in your guts, that we are all feeble, fragile little creatures who will not live forever. This may seem grim, but there are steps we can take to extend that life as long as possible. Eating right, exercise, blah, blah, blah. I hate to admit it, but those damn ParticpACTION commercials were true. But it’s not enough to just say you will get healthy. Genuinely take responsibility for yourself and your health and maybe you won’t end up in the hospital and this whole list will be useless to you!
5) You can watch the Ninja Turtles Trilogy in one day. You cannot watch the Lord of the Rings Trilogy in one day.
Bed rest is boring. I honestly think I was starting to come down with cabin fever by day three. The problem with the boredom is it makes you want to do something, which is the exact opposite of what bed rest is supposed to be all about. Luckily my lack of energy helped keep me in check, as I couldn’t sit up in my chair longer than 30 minutes before I had to lay down again and, for some reason, no one was willing to take me to the local pub in a hospital bed. I need to get new friends. But in all seriousness, find something low impact to entertain yourself long term. For me, this was watching movies. I discovered there were a lot of trilogies you could marathon in one day. Unfortunately, the Lord of the Rings Extended Edition is not one of those trilogies. Nor is the Star Wars Hexology, but who even watches the first three? The key here though is to ensure that the entertainment is enough to keep you occupied without interfering with your ability to rest and, potentially, sleep. For me, this meant rewatching movies I had seen a million times so that I wasn’t forcing myself to stay awake to see what happens, while at the same time, I was getting a nostalgic kick from childhood and high school memories associated with the flicks.
6) Make it about them, not about you.
When someone encounters a catastrophic illness and ends up in the hospital, everyone with even the slightest connection to them are hungry for details about what is happening and how they are doing. This is fine, on the surface, because it shows that you care about the person and would be upset if something bad happened. The problem is that in crisis situations there is inevitably one member of the family who becomes the sole “communicator” of news, which seems to usually end up being either the parent or the significant other of the person who is sick. This means that not only do they need to support and worry about their sick loved one, but they are also responsible for being the sole touch point to the outside world, repeating the grim news over and over again. As you can imagine, this just makes a stressful situation even more precarious. The biggest issue here, though, is that we all seem to have this weird habit of trying to relate to these communicators, and the stresses their facing, by sharing our own stresses or worries. I guess it’s like that whole misery loves company thing? The problem is rather than comforting the communicator this merely stresses them out more (or outright angers them) because everything they have is focused on getting their loved one through this illness, and now it feels like you are merely adding another log to a very, very crowded fireplace. Ultimately, the best way you can support these people from the outside is keeping it about the person who is sick — ask how they are doing, ask if you can help, offer to visit, etc. And if they would like you to visit, note that visits require energy and sometimes there just isn’t any energy to spare, use that time to help normalize the situation — chat about things you would normally talk about (sports, movies, funny things that happened at work, etc) to act as an escape from the stresses and rotten feelings rather than just reminding them that they’re sick and stuck in the hospital. When all is said and done, just try your hardest not to add to their pile of stress.
7) The most important thing in life is friends and family. Never forget.
I promised myself this wouldn’t get too sappy, as it has already been a pretty emotional month for me, but I wanted to end this by saying something we all know but rarely seem to genuinely acknowledge. In this life, there is nothing more important than friends and family. When all the cards are down and you are laying in that hospital bed, wondering whether or not you will make it through this, the only thing that matters are those standing next to you, holding your hand. Not money, not fame, not power. The only thing that matters in that moment are those who love and care about you.
We all know this. We say all the time how important our friends are to us, or our family. How we’d do anything for them. But do we? Will we? Consider the average day in your life — how much of it is dedicated to strengthening your relationship with your friends and family? How much energy do you put into these relationships? And how much do you simply put into yourself? In making money? I think sometimes we forget that we are communal animals, we thrive in tight-knit packs composed of those looking out for us, just as we look out for those we care about. Perhaps that is the true way to happiness — in spending time each and every day building our pack, strengthening our bonds, and supporting those around us rather than just spending time on ourselves. Love your friends and family, yes, but more than that be there for them and, if you nurture and strengthen those relationships then I promise they will be there for you in your time of need. And in that terrifying and horrible moment, being surrounded by that genuine and sincere love can make all the difference.
So thank you to my family and everyone else out there who cares about me. If nothing else, this experience has taught me to never take you for granted again.
On Thursday and Friday of last week I was invited by Danielle Cheyne to speak to 3 sections of her Human Services class on accessibility and life with a disability. We had some excellent conversation and, as always, I was impressed by the students comprehension of the issues and willingness to learn. In a city that can be, at times, wholly UWO-focused, I think we need to remember to take time and recognize the great work being done at Fanshawe College. Thanks to Danielle and the students for being wonderful hosts, I had a great time and look forward to my next chance to spend some time on campus.
Categories
Gaming Made Accessible
From a very young age, video games have been an important part of my life. Growing up in a small town, I was one of the few disabled kids in the community, meaning I had few opportunities for accessible competitive team sports. Unlike my peers, I wouldn’t get the chance to learn valuable lessons of teamwork and sportsmanship on the ice or extreme patience on the baseball diamond. While I certainly found other ways to develop these skills, by Grade 7 my parents started driving me 2.5h to London to play electric wheelchair hockey, I still had always wondered what it would be like to take to the ice with friends, playing in front of a roaring crowd, and maybe score the game winning goal in a championship game. As it turns out, I have been able to have some these experiences, albeit simulated, through solo and co-operative video games (like the NHL series on Xbox and PS3) that allow me to transcend my physical limitations and compete with and against other people in a digital space. In the virtual world, physical ability just doesn’t matter as much.
Unfortunately these experiences are not accessible to everyone — there are many with physical disabilities who are not able to use the standard video game controllers and are left to either struggle through a game with limited access or simply watching while others play. A new innovative technology, called control:mapper by Reality Controls, is looking to change that with the help of the AbleGamers Foundation. While it’s probably best if you check out the video to get a better sense of how the technology works, essentially they have found a way to use the Xbox Kinect to allow “hands-free” gaming that turns the player’s body into the controller. What makes this especially unique (and more accessible, over something like the Nintendo Wii) is that the system can be custom-tailored to the specific level of agility and dexterity of the user, so almost everyone will be able to use it. To see it in action and understand why this is so important, check out their promotional YouTube video:
[embedplusvideo height=”309″ width=”500″ standard=”http://www.youtube.com/v/iDU6suTC5_Q?fs=1″ vars=”ytid=iDU6suTC5_Q&width=500&height=309&start=&stop=&rs=w&hd=0&autoplay=0&react=1&chapters=¬es=” id=”ep7092″ /]
To help bring this technology to the masses, they are currently running an Indigogo campaign to raise the necessary funds. Got some spare coin? Why not hop over there and help give everyone the chance to play!
I woke up this morning to discover an Op Ed written by Morris Dalla Costa entitled “Lance Armstrong shouldn’t be judged for doping” was gaining some national traction on Twitter. After reading the article, though, I was left with some conflicting emotions.
Let me preface this by stating what follows isn’t necessarily a critique of Dalla Costa’s article, or even the intended point of the article, but just some thoughts that were going through my head after reading. So file what follows under “inspired by” as opposed to “in critique of” the LFPress article.
What I found most striking about the article, and about the handling of the Armstrong accusations and subsequent admission, is the focus on Armstrong being a cancer survivor. As Dalla Costa states, it’s tough placing all of the doping blame on Armstrong when so many of his colleagues were behaving the same way, look no further than Major League Baseball at the time, and as such at issue here is not the doping in and of itself. People seem to be personally offended, on a scale far greater than previously seen, by what he has done. We are responding as though we’ve been cheated by him, in a way more personal, horrendous and vile than any of the other cheaters. Dalla Costa goes so far as to say that Armstrong’s lies and deception literally tore out our collective hearts. Put frankly, Dalla Costa explains why Armstong is the villain here:
“He is an egotistical, lying, phony that took millions of people for a ride, people who didn’t know a thing about cycling but would watch and cheer the man who beat cancer, a hero and example in courage and honesty.
Many of those included the most vulnerable people in the world . . . those with cancer and those who supported cancer research.They thought Armstrong was a man that understood the suffering people go through, how families can be ruined by bad luck. They thought him a man who did what he did to alleviate suffering and misfortune. Not just those with cancer but ordinary people who rejoiced in watching him succeed on the bike, a testament to tenacity and faith.”
When broken down to its core, there are two narratives at work within this article; one of morality and one of betrayal. From one perspective, Armstrong is depicted as a bad person who has bullied, brutalized and cheated his way to tremendous wealth and celebrity. The other perspective, which is messy and far more complex, is that Armstrong is a bad person because he touched our hearts, a saintly man who we cared for deeply and were rewarded for our dedication to living “strong,” to overcome like our noble hero, by him turning out to be no better than anyone else. It appears perhaps the greatest crime Armstrong has committed, the one we simply cannot forgive, is that he is human and, even worse, just as flawed and complex as the rest of us.
I think this is particularly interesting because it touches on a myth that informs much of our response to sick and/or disabled individuals that we encounter. In the Judeo-Christian belief-system, the disabled have long been depicted as “touched” individuals, those who have been touched by God and through whom we might all gain entry to Heaven with charity and compassion. The disabled and the terminally ill are often thought to occupy a space somewhere between Heaven and Earth, often believed to possess divine (or merely clear) vision of how the world works and what should be important in our day to day lives to prepare for the day the days cease. In many ways, I think we look to the sick with admiration because we hope we too will have the same courage and grace in the face of death and are doubly humbled by those who come face-to-face with impending doom and survive. What draws us to Armstrong’s story is that, before the scandal, we saw him as an example of what we too could achieve. Facing the diagnosis of cancer, we too could fight back, win, and do incredible things in the aftermath. His story became a promise that being a good person and believing would be enough.
So perhaps we’re not actually mad at Armstrong, in the same way that we didn’t actually worship Armstrong to begin with either. We loved Armstrong before because he was an example of what we could become and we hate him now because he forces us to interrogate our own complex, flawed, and morally ambiguous reality.
And perhaps that is what this should really be all about, reality, because both sides of this story are true. On the one hand, humans can achieve miraculous things when they put their minds to it. While on the other hand, humans are inherently greedy, selfish and willing to do anything for a competitive advantage. The only question that matters, the lesson to be gleaned from the tale of Lance Armstrong, is which hand will you choose to hold at the end of the day?
Seeing some of the commercials for the new sketch-com “Kroll Show” on Comedy Central, I figured this was going to be an absolute dud. But last night in the first episode, comedian Nick Kroll landed one of the funnier critiques of media representations of disability while also taking a shot at Canadian icon, Degrassi: The Next Generation. Given that I’m writing about (read: watching and rewatching obsessively) Degrassi, this sketch rang a little too true. For those not in the know, Degrassi featured Aubrey Graham (aka hip-hop artist Drake) playing the role of “Jimmy,” a character who was disabled from a gunshot wound in Season 4 and spent the next 5 seasons in a manual wheelchair.
Check it out Part 1 of the sketch “Wheels Ontario” on Youtube, because it’s pretty fantastic: