NOTE: I am not accepting any further comments unless new ground is broken. I would suggest reading this post and the long comment thread that has become repetitive.
Earlier this month I came across the name Shane Burcaw. Apparently this man wants to be on the Ellen DeGeneres show. Needless to say this effort did not impress me and I quickly concluded it was the typical use of social media by a young person. Apparently he created a twitter bomb to get the attention of Ellen, an effort that generated a little bit of press and much discussion on reddit. Thanks to Alice Wong I realize my quick dismissal of Burcaw was in error. This man highlights a divide I have written about in the past: there is a dichotomy between people such as myself that came of age well before the ADA was passed into law and those that came of age after the ADA. I refer these two groups of people as pre ADA cripples and post ADA cripples. Part of the divide is simply age. I am 53 years old. Burcaw I believe just turned 21. I have a PhD while Burcaw is earning his BA. I am married, divorced and have a son Burcaw's age. We are at very different stages of life. It is important to note these basic differences because I am severely critical of young men and women, post ADA cripples, that have not been taught about the cultural implications of disability or the history of disability based oppression. In part I am happy some young people with a disability are blissfully unaware of the sort of civil rights violations that were once common place: forced institutionalization, involuntary sterilization, and ugly laws. Yet I am also stunned at how some young people with a disability use their disability. For example, I read Burcaw's blog Laughing at My Nightmare, and was taken aback at the repeated use of trite and uninteresting lines such as: "If you can take anything from my life, it should be that a positive attitude and sense of humor can go a long way toward overcoming your own problems no matter what they are." Burcaw is portraying himself as the plucky cripple who finds humor in his situation. He states he wants to make people laugh and thinks he is good at it. Using the old line from Readers Digest he believes laughter is the best medicine. He has even formed a non profit laughingatmynightmare.com and in some videos I have seen t-shirts with the initials LMN.
Burcaw is sun shine yellow optimistic. I do not share Burcaw's optimism. I do not find him funny. In fact, he has cast himself into the deep end of the inspiration porn pool. The short video "Happiness is Always an Option" is typical inspiration porn: http://thechive.com/2013/04/10/happiness-is-always-an-option-video/ Burcaw is characterized as having "just about the best attitude a human can hope to have". Others repeatedly state Burcaw is extremely courageous and inspirational. He is funny, smart and brave. His story will blow your mind. Burcaw chimes in and states "Don't underestimate the power of a positive attitude". The mainstream media is sucking up Burcaw's inspiration porn like it is nectar of the gods or mothers milk. In contrast I sit stone faced and wonder what sort of person could possibly take this seriously. If you tube is any indication the vast majority of people think Burcaw is awesome. At you tube, My Last Days: Meet Shawn Burcaw, is twenty long minutes of platitudes. It has been viewed over 100,000 times since April 8 when it was posted. The video has been liked by over 4,000 people. A mere 21 people, yours truly included, disliked the video. Almost 700 people left comments and about 99% used the word inspirational. I just do not have the heart to embed this video.
Scott Hamilton, a former Olympic figure skater who had cancer, once used the line "the only disability in life is a bad attitude". This tag line has been used repeatedly in inspiration porn. Good visuals, meaning the more disabled a person is, the greater the impact the tag line and photo can have. The most well-known visual porn photograph I am aware of featured Oscar Pistorius running next to a little girl who, like Pistorius is a double amputee. When I see this photo I am not impressed. In fact I get angry at the disparity between the image and reality. I also think of Stella Young, an Australian disability rights advocate, who wrote "The statement the only disability in life is a bad attitude puts the responsibility for our oppression squarely at the feet, prosthetic or otherwise, of people with disabilities. It's victim blaming. It says that we have complete control of the way disability impacts our lives. To that, I have one thing to say. Get Stuffed."
Get stuffed Mr. Burcaw. Your superficial notion of optimism is demeaning. It is also devoid of any factual basis. Take the image and tag line discussed above. The prostheses depicted in the photo of Pistorious and the little girl cost $20,000. Those limbs cost more than a brand new Fiat or Ford. Let me pose the following. A child who is a double amputee goal is to compete in the ParaOlympics. To succeed at this level of athleticism the child will need specialized and costly prostheses. This child's parents request the local school board to purchase such limbs. According to a recently released DOJ guidelines a powerful case could be made the school would be legally required to make such an accommodation to insure the child be empowered to participate in sports. An optimistic outlook is not going to the job done in this instance.
While I am railing against Burkaw in particular it is not him I am upset with. He is just one of many people that fails to realize inspiration porn shames all people with a disability. An optimistic outlook gets one only so far. The fact is Burcaw happily dismisses the glaring social problems associated with disability. The social situation people with a disability confront is not funny or inspirational. In fact to understand disability as an example of civil rights or human rights violations requires much thought and an intellectual leap in logic. Not many have made this leap in logic. It is all too easy not to mention rampant unemployment or the utter lack of accessible housing. No mention is made of inaccessible subway systems or the systemic pattern of abuse directed at people with a disability on the part of major airlines when they try to fly from place to place. Burcaw I would suggest should stop trying to get on the Ellen DeGeneres show and spend a bit of time reading about disability rights. There is a vast literature available at every major college in the country. In fact I have an even better suggestion. He should join ADAPT and join those that will soon descend upon Washington DC.
60 comments:
Bill, thanks for this. It's a much needed antidote to the facile dismissal of so many of the real issues.
2 days ago I tried to make a humorous comment about the exact same subject here:
http://disabilityrightsbastard.wordpress.com/
Henning, I, love your blog! You did a great job undermining logic of inspiration porn.
Something that's quite disturbing about Shane Bercaw's story is that he is emphasising its terminal nature when he is only in his early 20s. It's possible to live until your 40s or 50s with this condition - we have a quite well-known activist and politician here in the UK who has SMA and is still going fairly strong in her 50s (Jane Campbell). Bercaw can still talk very clearly and can operate his wheelchair very well even if his limbs are very wasted. These are in no way his "last days". Someone should tell him to use his skills for something useful rather than being an irritating, pointless celebrity who's famous for being famous. He is likely to have plenty of time to use them.
Besides the fact that he was born after the ADA was passed, he also looks like he's from a pretty well-off and fairly enlightened family, so access is even less likely to be an issue for him. I'm guessing his family could afford to make sure that access was never a problem for him, especially at school - poorer parents do not have that option, and nor can they buy their disabled children high-spec powered wheelchairs. Besides the difficulties caused by his condition, it's quite unlikely that he's suffered any of the hard knocks of life, whether disability related or otherwise, which is why he can wheel out cliches about attitude with a straight face.
Matthew, Absolutely agree with every point you have made. Bercaw is catering to the ignorant general public. I read his blog in detail and he strikes me as a witty man who gets by on charm. I also noted his parents seem to be comfortably middle or upper class. HAving siblings helps too. His life would be much different if he was from an impoverished single parent household.
Wow you have done it again..."inspiration porn" love / hate that term - but it explains. Whats wrong with being pissed of and making them uncomfortable?
MiddleChild, There is nothing wrong with being pissed off. But when you have a disability and are pissed off you instantly become a person who is "bitter about disability". This line of reasoning blames the perceived "victim" and undermines the fact disability based prejudice is not about any single individual but societal oppression.
One of the many difficult things about having an obvious disability for is this: If I'm in a bad mood it's attributed to the disability. If I'm in a good mood it's because I have a "positive attitude" and I'm being "inspirational." I just have moods like everyone else...
You will be dead soon. Too bad you'll be dead. I hope you are ready for being dead. You have no chance in the short, medium or long term other than death.
Just thought you might want to know what Shane Burcaw and his parents have heard from the age of 2 onward. Not 'Disability is as bad as being dead' or 'If I had a disability like that, I'd kill myself' but actual expectations and pronouncements on how far along to dead you are. Year after year, after year.
I include that to try and help give you some perspective, from the tip top of the disability mountain (stable SCI, T41/T42 rating, employed) as you make pronouncements regarding a) what those with cancer should be allowed to say, b) your views on SMA individuals, Type I and II and what they should be allowed to do and say - without referencing to those whom have Ph.D's, still degenative, and viewpoint. c) The sports as inspiration concept compared to the availability in the T30's catagories, T34/35/36 in detail, d) your love of the word porn, e) cost comparisons based on ignorance of both needs and f) the implication that this matters to you personally when it doesn't.
Please stop using the word 'porn', or 'disability porn' or 'inspirational porn.' Because such things do exist, but either you are not aware of them, or are and don't care. It would sadden me beyond belief that the latter is true. If you take children who aren't terminal away from their parents, because you present yourself as the only source of funding, then use children with disabilities to increase your status, power and income by exploiting children for an audience in the way beauty pagents for seven year old girls mandate sexuality - only removing parental consent - that's inspiration porn. Disability porn would be two guys pulling you out of the wheelchair and raping you while it is filmed. Only you aren't a target audience, because it is the helplessness and vulnerability which makes this such a expensive market - so it would be women, or children, and if it could be a 12-15 year old girl, that would get top money. The central wheelchair seating therapist for where I live recruite new SCI and wheelchair users and now has one of the biggest websites in the world for disability porn and titillation videos ($79-$119 a view for titillation videos).
SMA is also a rather personal issue to those who have it or experience it within the family. And how one person rages against 20 years of medical and social abuse is a personal choice (is that still allowed, within the optimal disability state?). He isn't a plucky cripple - he is unemployable, and with a terminal degenerative disease where making 30 might get him a journal article. I don't get how every SCI/amputee who tours on the motivation circuit (of which there are many) saying the same things doesn't cause an early heart attack of anger? The difference is Shane will die just as sure as a hanging fourth stage cancer - and has found how to work a system.
Regarding Shane vs. Diasy - the reality of her paralympics dream realized: all she need do to win is show up, literally. How long do you think it would take Shane to run the 100? Or you? Run legs run, run, run. 'The Others': a classification almost as good as 'cripple' and 'spastics' no?
I believe that that Shane Burcaw's disability education far, far exceeds yours. And perhaps you might want to invite him to talk about life at crip camp, or 'failed school attempts at integration', or 'hospital visits as a child' as he is an 'accident of nature.'
I am, like you, not emotionally removed (particularly not with SMA or amputations). Rage on, but why use those with disabilities as your targets.
Elizabeth, I heard the same thing Burcaw's parents heard year in and year out. I know the sort of toll that extracts. I take exception to much of what you say. There is no "tip of the disability mountain". There is just social injustice experienced in a host of different ways. Porn is not my favorite word. When I use it I try to undermine it as all porn is dehumanizing. You accuse me of targeting Burcaw. I did nothing of the sort. I discussed him to illustrate a larger point. If Burcaw's efforts to educate far exceed mine why take the time to leave such extended and in this case furious comments? I could write more in reply but it seems pointless. I truly do not get your consistent and unrelenting animosity directed at what I write. If my writing is so objectionable why read my posts?
Dr Elizabeth McClung passed away on April 29. 2013...rest in peace, you fought a hella of a good battle...http://elizabethmcclung.blogspot.com/
Phil, I heard Elizabeth died. We obviously disagreed often but I always respected her views. She forced me to hone my writing and for this I am grateful.
He isn't saying he is happy that he has a disability ... He just rather not reflect on the negative .. Some of you should just mind your daymn buissiness.. What's it to you if someone rather laugh then cry. People like you all disappoint me. Go sit in a dark corner and talk about how much you hate on others trying to stay positive and happy.
With Love
Me
Janet, You completely missed the point. Of course Burcaw focus on being happy. That is not what I was calling into question. I was pointing out that such a focus taps into some overwhelmingly negative assumptions made about disability. As for minding my business, I am not a self promoter as Burcaw appears to be (I have no interest in day time TV or the Ellen Show). I am an academic and I try to make disability studies and disability rights accessible, that is free of jargon for the average reader. Being positive and happy in my experience gets nothing done in terms of disability rights. All the ramps and elevators, accessible buses, and accessible buildings were fought for by people in the disability rights movement. If people took a happy pill daily the ADA would not exist. People with a disability made great sacrifices so young men like Burcaw can get an education, get on a bus, and live in an accessible home. These civil rights makes me happy. HEnce I am delighted Burcaw does not encounter the same of disability based prejudice I did. I would suggest rather than relying on raw emotion and calling me a hateful you read about the disability rights movement. Better yet, just google Ed Roberts.
Sorry...I'm failing to see how someone with a terminal illness, like Shane Burcaw, supports your argument. Yes, Shane is confined to a wheelchair but that is because his muscles are becoming more atrophied every day. Time is Shane's enemy. The chances are good that he will not have the opportunity to get married, have children, and get divorced. Who can blame a young man who has a gift of humor and writing for taking his message a far as he can?
That would be you.....your message is sounding like sour grapes to me.
Sanda, When people see Burcaw they do not see a young man with a terminal illness they see a young man using a wheelchair. The general public sees a young man with an atypical body and instantly think "wheelchair bound", "confined to a wheelchair" or other stereotypes. Time is indeed Burcaw's enemy; it is yours and mine as well. Who knows how long he will live. He could fall in love tomorrow and marry next week. You or I could do the same. Sour grapes are not involved. I simply offer a critical analysis of the social significance of disability from a civil rights perspective.
I understand what you're saying in this post and to some extent agree but I think you make it seem as though Shane has never had a negative day, never cried with frustration and that has to be untrue. Sure he's lucky to have some benefits by being born into the family he is a member of but I don't think you should make decisions for him as to what he should be doing with his short life. As to the comment of him not being so bad off and others with his disease living longer than his doctors have stated that he will, ok, maybe but maybe not.
HI! Randomly fell on your blog and found the post on Shane Burcaw interesting. While I believe you make some good points, which I, as an able bodied person can only marginally -and not fundamentally- understand, I think your tone, as well as parts of the content itself, are off.
I am going to begin with a cliche' myself, just to keep the mood: Whatever you are trying to say will probably be better and more widely accepted if you sprinkle it with some niceness.
Now, this particular video is an awful, blockbusterish all-American tear jerker like I haven't seen in a while, and the pathetic piano ballad in the background, hands in hands with all of the accounts of how amazing this kid is are laughable at best. BUT I don't know that the message itself is wrong, and I think you would have done a better job- and please forgive me for trying to do it for you- had you been more objective about the message. Life IS better if you laugh at it, for any of us. It is for you, on a wheel chair, and it is for me, on my two legs - and I am also, pretty, well off, young and really smart. When I am upset, like you, like him, like the Queen or Richard Branson, I solve very little being angry and a lot more being positive. So do you.
On an ending note, I think you have something great here with your writing. It is poignant and true and you are giving voice to issue most of us ignore. But don't bash those you don't share your hard-ass views - it may result in people not reading you anymore, which to me sounds rather counterproductive to your mission. FG.
Tspoon, Of course Burcaw has had bad days. I am sure he has faced many physical difficulties. I am equally sure he has faced needless social prejudice about his quality of life. It would seem to me that he can focus on being happy and be aware that he has led and leads a privileged life. It is those that do not have the familial support that I am concerned with. I wish Burcaw shared that same concern.
Foxy, I have no idea of your age or experience with disability. Given this I can only comment on my life experience. I have found sprinkling my words with "niceness" is useless. I came of age well before the ADA existed and the idea of disability rights did not exist. All the ramps you see, lifts on buses, and the legal right to an education exist because people with a disability refused to be nice. Instead they were and remain hard asses unwilling to let people off the hook in terms of equal access. My anger is directed in a constructive way--toward a a more inclusive society. You may not like my tone but without it no progress would have been made for people with a disability. I would be thrilled to be nice and happy and cheery. When people with a disability and their civil rights are supported by the vast majority of the population I will take the happy pill you desire. Until that day comes I cam content being a hard ass.
Bill,
Your post helped me get words around parts of Shane’s recent media journey that I’ve found unsettling, but have been unable to articulate. So, for that, I thank you.
I am horribly biased here; Shane is my nephew, the son of my husband’s brother. I have known him all of his short life, which has extended far beyond his original prognosis. Every day we have with Shane is a gift and we, his family, are profoundly grateful, as we are for each day we have with all of our children, nieces, and nephews. Burcaw children ROCK, that’s all there is to it. We watch Shane continue to live his life, to write, start a business, make new friends, and experience far more than we ever thought possible, and we are happy. We laugh and enjoy life with him. Burcaws do a lot of laughing.
I have a larger point too, one that doesn’t include me telling you to “get stuffed.” Yes, Shane’s message is simplistic, and yes, I do cringe when I see how the video producers have dramatically emphasized the terminal nature of his disease and go on about his courage (though he is absolutely courageous). And, I absolutely hate it when he talks about his private parts on his blog with 300,000 followers!! Ugh. How is this elevating the dialogue regarding disability rights? I’ll tell you — it’s not.
And that’s just fine.
Shane’s audience is not your audience. It’s not my audience. Not even close. Shane spoke yesterday to middle and high school students in an alternative setting. These kids have disabilities of their own, mostly mental and behavioral, and are on the fringes of society, screwed over by every “system” with which they interact. They are mostly poor and African-American. When Shane spoke to them, you could’ve heard a pin drop. He talked about his life, his disease, and some of the challenges he faces. He did talk about being positive in the face of life’s adversities, whether large or small, though he used simpler words, like “suck.” Afterward, he took questions. The kids asked him how he took tests, how did he eat, did he sleep in a normal bed, what were his fears? One kid stood up and thanked Shane for coming and for talking to them about his life. I believe he may have used the word “inspire.” Then, we all had cake together to celebrate Shane’s 21st birthday.
You’re right – no laws were changed, no one waxed poetic on the lack of rights afforded those with disabilities, though we did talk about how several large men had to lift Shane’s gigantic wheelchair onto the stage because it wasn’t accessible. But, those kids now know more about what it means to be disabled. They know Shane’s not developmentally disabled just because he looks like a “T-Rex” as he says. They think it’s cool they can follow him on Twitter. They know that even though he’s a little, funny-looking white kid, he’s a lot like them, with fears and insecurities along with hopes and dreams for a better future. I don’t know for sure, but I suspect those kids might now think twice before parking in a handicapped space.
So, okay, “inspirational porn’ is a bit harsh, but I can see how you might feel that way. I encourage you to close YouTube and go on about your business of elevating the dialogue, important business which absolutely needs to happen. And Shane will keep on talking to kids about life and how it doesn’t have to suck. He’ll tell a few jokes when he does this. And we’ll be laughing with him all along the way.
So much negativity, shaming, criticism, pessimism and hatefullness directed at this young man's attempt at happiness. Please leave him and the fruits of his labor alone. He is handling his life the way he wants to. If ya don't like his t-shirts, blog, videos, website and foundation; then don't have anything to do with him or them. There, YOUR problem with him is solved. If he gives hundreds of thousands of people hope, and he's happy too, then what's the problem? Does he need the permission of the entire ADA community to do any of this? NO!!!
Wow. Longest useless blog. Don't ramble so much next time you're making a point. This isn't a dissertation. It's a blog.
Mset510, Your critical comment is hard to reply to in part because I used Burcaw's effort to illustrate a much larger point that you ignored. Burcaw can do whatever he wants and I wish him well. I have the right to point out that his actions have larger implications that I take exception to. I would also like to note the "ADA community" you seem to dislike fundamentally changed the lives of people with a disability. Without a critical perspective and protests the civil rights Burcaw enjoys would not exist. Finally, I have written 500+ posts. Exactly one is about Burcaw. Sorry but my problem it appears to me is that I refuse to board the happy train.
Jean, I am an academic and writer. This "useless" blog as you put it is intended to flesh out academic ideas to a broader audience. My posts are never longer than about 1,500 words. In my line of work that is short. In this day and age with twitter and facebook I suppose many would consider my posts long.
Groovy Ruth, Wow, what a wonderfully gracious and insightful comments. Thank you very much. In my experience the people with a disability that lead a rich and full life share one thing in common: strong familial support. Based on what I have read I have no doubt that Burcaw has gotten great support from his family. I am equally sure the family rocks as you put it. I agree my audience and Burcaw's are dramatically different. That is an excellent point. Another point of agreement--the message Burcaw has focused on, happiness/laughter, is extremely simplistic. But I get his too. We live in an electronic age of twitter and social media where in depth analysis is not valued. Thus I think I am product of my time when scholarship, education, and detailed analysis were valued. Burcaw is product of his time. He has tapped into social media in a way that has resonated. I will never accomplish this (not that I want to).
Inspirational porn is term I liked and have used. I am no longer sure using this phrase is such a good idea. As I used it in this post it was too harsh as was the phrase "get stuffed". I suppose at issue is my frustration with the younger generation of people with a disability. Burcaw seems unaware of the disability rights movement. Of course I could be wrong. The point I am trying to get at is too many young people with a disability take disability rights for granted. And I cannot take them to task--disability history is not taught at secondary schools and is rarely discussed at the university level.
I have a point of disagreement: I would never allow myself to be carried up on a stage or into a building. This sends a very bad message and more to the point too many people get dropped and injured. Being carried as Burcaw was is a violation of the ADA. Another point of disagreement: I am extremely critical of speakers that go to secondary schools. This sends a mixed message to children who see the world in black and white. On the one hand you have a dynamic speaker and impress the kids. On the other hand, access is often segregated (one short bus with a lift) or a host of other ADA violations exist. Is inclusion then "special"?
Again, thanks for such a gracious comment. If Burcaw is ever in the NYC area send me a message. I would like to meet him. And I can prove I do not have horns nor am I as bad as some think!
Bill, thanks for your thoughtful response. I don't think any of us are too far apart here, just coming at it from different perspectives and generations!
A clarification: We did NOT lift Shane along with the wheelchair. His brother, one of his primary caregivers, lifted him out of the chair while the transfer was made. We were very aware it was less than ideal. Nor did this happen in the presence of any of the kids. It could have been a potentially humiliating scenario, but Shane handled it with grace and humor as he usually does. I do think he is aware of the disability rights movement, but has yet to discover how best to articulate his thoughts on that. I suspect this may evolve with age and experience.
Thank you and I hope that you and Shane will have the opportunity to meet soon.
I find the negative response to those of us who try to call attention to the downside of inspiration porn to be fascinating. And I think that gets back to the reason the term "inspiration porn" is so appropriate. I would love to see any studies (using functional magnetic resonance imaging or analysis of neurotransmitters) of the brains of people who enjoy such videos. I suspect that there's some major release of endorphins, oxytocin, serotonin, or all three.
If that were the case, it would explain a lot. (I know I derive great pleasure from watching cat videos; maybe it's the same thing)
When I was 20 years old, I was involved in what we called the "Handicapped Students Collective" at UMass. We were working on access issues on campus and opposing Reagan's attacks on the Rehab act (1981-2). I don't think I would have known much about disability rights if I hadn't been involved with other students with disabilities.
The best solution may be to address Bercaw directly, to start the conversation that resonates with his experience (such as being lifted up on a stage instead of having a ramp) and going from there.
For me, the revelation of "finding my tribe" among other disabled people was feeling for the first time that when a disabled person complimented my achievements or talents, I didn't worry that the praise was coming from pity or some other twisted motivation. That is a valuable gift that people with disabilities can give to each other.
I don't know how to respond to people who get pissed off that we're raining on their parade. Maybe inspiration porn is a "guilt-free" drug of choice for some people, and when we point out that it might not be entirely guilt free, it "brings them down."
Groovy Ruth, I agree in the big picture we share the same goals. At issue is the way we go about it. Burcaw is all of 21. I cut much slack to people that age in part because I recall just how smart I thought I was at 21. Looking back I shake my head in wonder.
I hope Burcaw figures a way to incorporate some semblance of disability rights into his efforts. as I often say to friends, we need more nuance when thinking about disability.
Thanks for the clarification of how he got on the stage. I would encourage him to be more of a hard ass in terms of access. I refuse to be carried under any circumstance.
Tigrlily, I am not sure using the phrase inspiration porn helps. In fact it just seems to piss people off. Angry people do not rely on reason but raw emotion.
Some feminists on the side of disability rights also do not like the phrase. So I remain unsure about what to do. Totally get you point about finding a community. It can be life changing.
Hi. This is my first time ever coming upon something like this, and coming from a person who lives day to day with a disease, I have to say this hurts my heart to read about so many people who have such negative views on people with any type of disease or illness. And yes, I am 17 and I am young, but I have lived with Juvenile Rheumatoid Arthritis for almost ten years now and battled stage on bone cancer. I have been through multiple procedures, treatments and medications and I think I reserve the right to say he is an inspiration. Living with any type of disease is a hard thing to do, and personally, I think anyone who hasn't lived through it or been a part of someones life who has needs to keep quiet. You have no idea what it's like. This young guy is showing that people can still live despite whatever "handicap" they might have. Keeping a positive attitude is sometimes the only thing standing between depression and the will to keep fighting. I think that's what his entire message is.
And as for those who think he's using the media or whatever, you may not know this, but any sort of financial contribution is so appreciated and can go far being used for anything. I find him inspirational and I hope someday people who are negative about things like this will open their minds to a better understanding of living life with a disease.
Evalina, I am delighted you took the time to leave a comment. I particularly like to hear from young people such as yourself. As many have likely told you, you are the future. I am not surprised you have not read anything tangentially related to disability rights; it is simply not taught in secondary schools and I can imagine you were taken aback to read my post. I urge you google disability rights/Ed Roberts. I also urge you to go to the DREDF website and watch video interviews. I think you will be touched and impressed.
Of course you can find inspiration in Burcaw's life. My point was that inspiration has a down side for people with a disability. For instance, the best way to raise money is to prompt feeling of pity. Pity by itself is demeaning. In creating Laughing at My Nightmare it does not take a big leap of logic to think all disabling conditions are a nightmare. This is not the case as I am sure you know.
I know all too well what it is like to live with a disease and a life long disability. I came of age before medical technology existed. I spent most of my time growing up living on various neurological wards with 16 other extremely sick children. Most of the kids I knew did not reach their 21st birthday. Medical care has come a long way and there are lots more people with a disability today.
Good luck and when you get to college. I hope you will take a class in disability studies. Many universities now offer classes in this field of study. Again, thanks for writing.
Willià m,
I admittedly haven't read all of the comments to your post but I DO feel compelled to comment that you conveniently omitted the fact that Shane has a degenerative disease (as do I - ALS). You can hide behind the veil of academia but your bitterness and judgement towards those of us, like Shane and his family, who choose to find joy in life reveals a pettiness which I'm sure, you are better than.
So what if the kid has gained some recognition and is gaining blog and Facebook followers by the thousands? It doesn't detract from your work (whatever that may be). It certainly doesn't impede the work of disability advocates in advancing enforcement of the ADA.
If people find Shane and his family an inspiration, or if it moves them to be a bit more kind and understanding the next time they interact with a disabled person, why do you care?
As for your incessant use of the word "porn" attached to the words disability and inspiration, that too is beneath your academic and personal potential as a civilized human.
I pray you find peace and shed your cloak of bitterness. It IS possible to accomplish positive change for the disable AND find laugh every day. Try it.
John A. Gregoire
John, While I do appreciate the time you took to leave a comment, I must say I am growing weary of responding to the charge I am bitter. I have stated many time in posts and in comments to posts that this characterization misses the entire point of my work as a scholar within disability studies and my efforts on this blog. Furthermore I do not hide behind a veil of academia but rather try and make scholarship in my field more accessible to a general audience. Whether one has a degenerative disease or is medically stable is not relevant in my opinion. All people with a disability or a perceived disability encounter bias and stigma. If Burcaw wants to be well-known and be an inspiration to others he is free to do. I have stated this many times. My point is that his efforts, while laudatory in your estimation, have a down side. In part that down side is the long held charity model of disability that I perceive as being inherently dehumanizing. As one person stated in the comment section my audience and Burcaw's audience are very different. Our goals are different or perhaps the way we are going about reaching our goals are different.
As for my supposed constant use of the words "inspiration porn" I already stated I will no longer use this term. I have come to conclude it has little value because it simply angers people and inhibits a nuanced discussion. I can make the same points I desire without using the word "porn". Last point, while we disagree I sincerely wish you well coping with ALS.
Hi Bill,
I just came across Shane's blog and shortly after this post. I wanted to thank you for it because it made me think about Shane's message differently, and I value that.
I question whether his message is really that negative for disability advocacy. I hope you will pardon my ignorance, but are there studies that link these sorts of overly simplistic messages with negative attitudes toward the disabled?
My intuition, which could be incorrect, is that it's positive that he's sharing his experience with people who might not otherwise have to see disability. It is a burden of any minority to be have to constantly educate the ignorant. He's chosen to take that on because he has a skill with writing and finds it empowering. He's witty and employed doing something from which others can gain some insight into SMA. I may have really missed it, but why is that a bad thing? Doesn't more interaction foster more knowledge? I feel his audience is intelligent enough to distinguish SMA from other disabilities.
I also did want to comment that the tone of the post and some of the comments here do come off a little bit like "This kid doesn't know how good he's got it".. which regardless of intention comes off - to me, someone with no prior knowledge of SMA- like a bitter personal argument. In what position are you to judge the burdens he has faced? How does one person with a disability trivializing another's physical burdens and prognosis reduce oppression?
Ducky, I have a very dim view of mainstream media. In my limited exposure to TV, radio, and news people I have sadly concluded they will spin any story to meet their needs and goals. In terms of disability the spin is always simplistic in the extreme. Disability is bad, a fate worse than death. People like Burcaw get acclaim because they are happy in the face of tragedy--or as Burcaw has done "laighing at my nightmare". This leads people to assume a happy disposition is all that is needed to have a typical life. The reality is people with a disability are confronted with mass transportation systems that is hard to access and severely limited options in terms of housing. A happy disposition can not overcome these very real barriers.
Burcaw is privileged. He is exceptionally lucky to have such a supportive and strong family that appear to be doing well financially. By itself, this makes him unusual. I am happy he has great support--I enjoyed such support growing up and it changes one's life for the better. I suspect Burcaw does not know much about the history of disability rights. I cannot fault him on this front. This history is rarely taught.
As for the issue of bitterness, see my post dated June 3. I am not bitter but rather angry about continued injustice. I am not attacking Burcaw personally. I merely point out there is a larger down side to his message.
As for studies, yes. Many of them. See Beth Haller's book Representing Disability.
Thanks for your response, William. I'll look up the literature you referenced.
I'm not fond of mainstream media, either. I agree that it propagates a lot of superficial attitudes that sustain social injustice. Superficiality and sunshine and rainbows sell the most so that's what they're mostly selling.
I still wonder what real impact Burcaw's "work" has. Does his work mostly encourage superficial and harmful attitudes about disability? Or is blogging a different medium with potential to change the way his audience interacts with him, and thus allow them to interact with him as person rather than just an image of disability? It would be interesting to use his blog/twitter platform to actually conduct a quantitative or qualitative survey on attitudes toward disability.
Also I wonder if Burcaw won't come around to a more rigorous perspective on disability and disability advocacy as he gets older... Certainly my perspective at 20 was very different from what it is now. He is doing undergrad research on disability identity which seems to indicate he's open to understanding more about the history of disability.
Anyway, thank you for your blog, it's given me a different perspective and a lot to think about.
Ducky, I have no clue how Burcaw is perceived by the mainstream news outlets and those he has been exposed to. However, I do worry about the degree to which he may be exploited and summarily dismissed. It seems to me, and I maybe wrong, but the press is playing up the fact he may die at any time in the near future. This speculation makes his story sell and resonate. I find this distasteful in the extreme. I hope he leads a good and long life. I do hope as he gets older he will learn more about disability scholarship and the disability rights movement. Perhaps then he will change his views. I know I did not know a thing about disability when I was his age despite the fact I used a wheelchair for a few years.
Have you given consideration to the possibility that at Shane's age his way of facing the obvious challenges in his life may be to sell (if only to himself) that optimism is what gets him through each day? In time, he may come to a different realization but for now, that's what works for him. When you use the words optimism porn, you are not strengthening your argument, you are diminishing it. Those are harsh, sensationalistic words and you come off sounding like a cynical, condescending jackass. Do you remember your view of the world in general while you were in your 20's? Evidently not. Tolerance of others is a lesson you must have missed on your life journey. How sad.......
Kelly, I suggest you read the many comments about this post. I am well aware of Burcaw's age. Obviously this is a factor. I have no doubt I was as naive and ignorant at age 21. But you fail to ask the all important why? Why does simplistic optimism not work? The answer is clear to me. Needless social and physical barriers remain commonplace. I am sorry but cheery optimism Burcaw espouses is useless in fostering change. As for the "inspiration porn", I no longer use this term. It is counter productive. See my comments to this post. Lastly, as for characterizing me as a jackass I addressed this charge at length in my post of June 3. It is up to you if you want to read this entry. Thank you for your critical comments.
In response to your comment, "People with a disability made great sacrifices so young men like Burcaw can get an education, get on a bus, and live in an accessible home. These civil rights makes me happy. HEnce I am delighted Burcaw does not encounter the same of disability based prejudice I did. I would suggest rather than relying on raw emotion and calling me a hateful you read about the disability rights movement."-- I completely understand that Americans with disabilities should be mindful of and thankful for the efforts of those who secured them these rights, just as African Americans should feel about Rosa Parks and the freedom fighters. However, do we expect blacks to refrain from an overly positive attitude, lest the world forget about those who fought hard for civil rights? And should we castigate a young man who has been raised in this social-media generation for utilizing the very media that shaped his generation? If I follow your logic (and to be fair, I really am trying to), is Shane Burcaw the problem, or merely the symptom of a greater disease? If being positive to the point that people use the gag-inducing word "inspirational" is what gets him through his day, is he not entitled to that? Does he have to change his demeanor or refrain from using Facebook or Instagram to discuss his life the way his peers discuss their social lives just because he has a disability? That seems like a double standard. People generate viral pleas to appear on Ellen for much more ridiculous reasons. I think he is acting like a twenty year old in 2013, because, well...that's what he is.
Katie' did you read through the comment section at all? I have addressed each and every point you made. He is 21 and trying to become a public figure with a simplistic message. I have a right to point out the flaws in his happy message. Being happy does not protect a person's civil rights.
Hi all, I just finished watching Shane Burcaw's video on youtube and I decided to look him up and see how his "Laugh at My Nightmare" program was going and I found this; a blog about how much a few people dislike this young man for being happy. What the literal fuck is wrong with all of you. Who the hell are you to judge this person, someone who was born with a life threatening disability, on being fucking happy and sharing his view on life. This so called "inspiration porn" is probably the biggest load of bullshit I have ever heard. Now I'm not a blogger or anything; in fact I created this account just to say how fucking disgusted I am by this shit. You should all be ashamed of yourselves . And to everyone, including the piece of shit author of this, who left any kind of negative comment towards this young man and his fucking happiness, I sincerely hope you have to somehow live through the same hell he is. I want all of you to feel the pain he feels. This is the end of my rant I hope you all are incredibly pissed off at me. Also please note that I probably will not respond to any of your comments because I frankly don't give a fuck about what any of you have to say anymore. Thank you and fuck you. =)
Jack Your profanity laced comment and others like it never cease to amaze me. Burcaw can be happy as happy as he wants. I only care about the implications of such a simplistic idea. I suggest you look up the word ableism.
Most likely you will delete this comment based on the unparalleled amount of self righteousness exuded in this pathetic article, but wow if I've ever read a more bitter sounding, hate filled, twisted perspective article in my entire life. You should be ashamed. The kid is clearly going in the direction he was meant to go. He is not faking a sense of humor. He has it and used it to cope with everyday life the same way you seem to cry behind your key board about someone else's happiness that you can't achieve. For self loathing maybe? Here's an idea make a youtube video and advise all the cripples to be self loathing cry babies. Maybe that will work better.
I saw my mother raped, watched my father be forced kill my two brothers and then stabbed to death. And then any remains of my family was quickly taken away from me as I was removed from my home. Many of my best friends I grew up with went 'missing' as people ignored the trail of land-mines they didnt catch yet.
No, but let's all hate someone who wants to smile. Lets hate inspiration. Or how about you applaud humans for smiling once in a while in this depressingly "realistic" world, where priority lies in getting to work 2 seconds faster instead of spending 2 seconds looking at your kids.
Yeah, maybe his approach to getting attention wasn't necessarily the best way to go about it, but his message is clear and true. You have to be happy even if you've gone through all the hardest shit. There's a world we need to take care of and it's not going to get any better if we sit here and hate on other peoples path to joy.
To this day, I work with orphans who have lost their parents. Some with disabilities, some without. I'd have ended my life years ago if those with disabilities had been as bitter sounding as you.
Hal, Thanks for writing. Due to your comment and other diatribes any further comments to this post will now be deleted. The charge I am hateful on your part is a variation of the bitter theme and my deconstruction of inspiration. No new ground is being broken here. I have addressed your criticism many times in the 45+ comment string. I am weary of stating the same thing over and over.
I'd not heard of Shane Burcaw until he crossed my tumblr dash and did a google search on him and his condition. Bill, you make some interesting points about ableism in our society how the 'inspirational stories' can likely diminish true reforms, because all disabled people need is to be happy! (I'm not American so not sure what you're referencing with 'ADA'). I won't address the negative points in your discussion as I think you've addressed most of my concerns to them in the comment section, suffice to say I think Shane was a poor example for this in some ways (and a distraction from the point you were trying to make - many in the comments section seemed to miss your point entirely and focused merely on your example.)
I have MS, but have been left relatively 'untouched' by my condition, (ie I'm in a relatively 'privileged' position at 43) but I am aware of the discrimination faced by many. Initially I was quite open about my MS, but I've changed my tune of late, and I do worry about the challenges I may face if my condition worsens, my sunny nature and general positive disposition may face a battering and is not necessarily going to help if systemic discrimination of the disabled remains. Anyway, just wanted to say your blog is quite interesting.
Bugsie, I am breaking my policy of not permitting any further comments because you read my post and comments that addressed some of the withering criticism. The ADA is Americans with Disability Act passed 1990. The aim of this entry and all others is to make people think about disability from a civil rights perspective. I wish you good luck managing MS, it is a poorly understood condition.
NOTE BY WILLIAM PEACE: I am posting this comment by a new reader. Thoughtful and insightful comments will be posted. Diatribes will be rejected.
I came across your old blog post and read quite far down the comments posted.
I chanced upon your blog while googling Shane Burcaw after seeing his piece on the Huffington Post site.
I think some people may have misunderstood or missed the point you were making. I don't think you sounded bitter or jealous of the publicity that Burcaw is getting.
In fact, I think the term "inspiration porn" is very apt for describing the industry which churns out cliched sayings like folks should be happy no matter what, and exploits the fact that many - whether disabled or not, struggle with our own problems and always hope for a "cure".
Your blog post provided a very interesting and different perspective on disability, those who struggle with it, those who have suffered and yet fought to make a difference, for a more inclusive society that looks into matters like making buildings and public transport more accessible to the disabled.
Your point, about how the young generation of disabled know very little of the difficulties of those from older generations, reminds me not to take things for granted. I come from Singapore and our country celebrates our 50th year of independence this year. I'm a third-generation immigrant in this country. My grandparents came from China, with nothing, desperate to escape the poverty in China, to find a new life and means of survival here. They are among the pioneers who helped build the country. They lived through the Japanese occupation, eating sweet potatoes for survival and fearing for their lives. The present generation is living off the fruit of the labour of the pioneer immigrants and the hardship they endured. Similarly, those who are disabled today have more opportunities to live a better life because of people who suffered and fought for rights of the disabled.
But it is difficult for the younger generations to ever fully understand the sacrifices made by the older generations, be it about civil rights or nation-building.
One of the ways to bridge that gap is through dialogue and conversation, which I believe is what you are trying to do.
From your exchange with Burcaw's aunt, I think you are a big-hearted person who has experienced much and has a mind that is wide enough to accommodate differences in opinion. And I do agree with you, you cannot please everyone, and sometimes while niceties can help, there are times when it is necessary to be "hard-assed" to send a point across, get yourself heard so that action can be taken to address the problem areas. Sometimes, being nice is a form of hypocrisy. I admire you for speaking your mind frankly yet in a civil manner.
PART TWO OF COMMENT:
You shed light on a subject which is not the easiest of topics to talk about.
Your views resonate with me and I feel they are applicable to other areas of life and society, not just on issues regarding disability, but also people who have been marginalised and fallen through the gaps. It is a stark reminder not to view everything through rose-tinted glasses and think optimism will save the day. Change comes through hard work, sacrifice and the courage to offend and continue in the face of strong opposition, to say things nobody wants to hear and make a stand.
But personalities like Burcaw do serve a purpose, as you acknowledged in some of your replies to comments. I would liken him to Norah Jones or Kenny G. Jazz lovers absolutely hate cheesy elevator type of commercial music which are great hits with the public. I guess you could call it smooth jazz porn. But musicians like them do serve a function, superficial as their music may be, they draw public attention to a genre of music that is not widely understood or appreciated. But those who truly care will go beyond and explore the subject and discover the true heavyweights of jazz like Miles Davis or Charlie Parker. We need folks like Kenny G who are provide an entry point to a new world.
Similarly, Burcaw has drawn much attention to the subject of living with disability. Yes, there are many who simply get a high from the "feel-good happy pill" type of articles, but those who are interested will google and find your blog posts which offer deeper analysis and a wider perspective of the issues that affect the disabled and how society can be improved to become more inclusive. I would never have come across your blog if not for Burcaw.
Thanks for sharing. Your work and blog certainly makes a difference in the world.
Anonymous commentator above,
My goal since I started this blog is to foster a dialogue about disability that does not exist in the mainstream media. My desire is to get people to think. Agreement with my views is not required or expected. It is all about nuance. Burcaw's simple goal is simplistic and dependent upon an antiquated notion of disability and ignorance of disability history. This is far from a criticism--I knew nothing of disability history at his age and my mentor at Columbia University, Robert Murphy change my life. Rather than write a pop memoir Burcaw should go to graduate school. He has potential.
I know comments are closed, but I wanted to say thank you. I have lupus and LHON, both of which are "hidden" disabilities.
Most of the time I look "normal" to others. While I admire Burcaw's ability to laugh at himself, his image-crafted optimism hurts more than it helps.
So many times I've heard "but you don't look sick!" And "maybe if you tired harder to be happy you'd be cured". Then they point to the eternal optimists and compare their struggle to mine...
"If he can be happy, why can't you?"
I, like all people, have good days and bad. What Burcaw is going through sucks...but it doesn't mean that my situation doesn't suck. And it doesn't mean that the struggles of others less visibly or more visibly disabled don't suck.
I wish that he'd acknowledge that forced happiness isn't a cure, and that it's ok to be human and acknowledge the bad days.
He has a gifted voice. I wish he'd use it in a way that didn't make others feel as if they are somehow inferior or defective because they can't choose to be sunshine and rainbows every minute of every day.
Having bad days doesn't make me less of a person. Acknowledging the fact I'm human, however, makes me more of a person.
It's ok to not be ok. It's not ok to have to pretend to be ok to be considered acceptable to live in mainstream society.
And while I know that you don't want to continue using the word "porn" (and understand your reasons for doing so), in many ways that what he is: an unrealistic and idealized expectation of behavior, portrayed as real, that those looking in expect everyone else in a similar situation to emulate. But we never see the gritty reality behind the scenes.
Thank you so much for posting this. I too have tried to get people to think about the dark side of disability and use shane to illustrate my point. I have received more damn hate comments than I ever thought possible... Just for offering a less-than-sunny perspective. I guess for some people it is just too hard or painful to really think beyond the superficial optimism. Thanks again. I don't see you as bitter at all
Hello, I just happened to come across this after seeing a video on Shane. I find your point-of-view interesting and I think I understand your feelings on the subject.
I myself happen to have the same disability as Shane and I also knew him when I was younger. I am currently 25 which would make him 26, I believe. I would argue our experiences were more or less similar based off of what he has talked about.
I can understand his upbeat attitude really well, I do the same thing. I don't think being optimistic is a bad thing but it almost feels portrayed that way here. I prefer to have an upbeat attitude because of the fact that since I was 2 life has been far more difficult. Life expectancy was okay, about 30 or less, but with the added reality of muscle degradation. Degradation in which I myself at 25 have gotten to the point where I can barely lift a small cup or simply turn my hand. A positive and optimistic state of mind gets me through day by day. Sure, optimism isn't an answer but living in cynical depression doesn't really appeal to me either.
It may seem kind of naive and foolish to spill out all the "inspiration porn" but if people see someone who seems to have nothing yet looks and acts like he has all he needs, maybe other people can see that and think that maybe life ain't so bad. If he can get there with these challenges, why can't you?
I myself laugh and joke about my disability because laughing makes people happy, and when they're happy I am happy. It is a simple fact of my life and I believe he has a similar sentiment. The reality of the disability I have hasn't changed but I would rather laugh at it than let it control my everyday life and my outlook on it. Learning to laugh at yourself is a necessary step to getting past personal challenges like SMA in life, at least in my opinion.
I myself love history, so believe me when I say that I understand the horrors people with disabilities have gone through before I was born. I am under no illusion of that and I am one of those people who hates to see history repeat itself. As of now though we are getting past all of that and I don't think dwelling on it will help. My generation has had the opportunity to avoid many past struggles and become increasingly independent thanks to technology. There is reason to be optimistic and far more positive now. Just recently a new treatment has just been approved for Shane and my disability, which will essentially extend our life quite a lot and new kids may never have the issues I do.
I think you want people to be more based in reality and not give into false optimism as if it is a cure-all. I could be wrong, but that is sort of how it came across to me. I sort of agree with you as I dislike a lot of the virtue signaling that seems to be going on, but I don't think there is any real harm in Shane's particular case. I myself have been in a slump lately and reading about him and watching him has reminded me to be more positive, which I believe is what he wants. I mean is there a reason to not have this outlook? I simply don't think telling people to laugh at their nightmare is such a bad thing.
Sorry if this is poorly written. I am not quite as articulated as some.
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