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Saturday, February 22, 2014

On Comments and Hate

I have struggled in recent months. My struggles are not personal or professional. My struggle has been blog related. Bad Cripple is a labor of love. It is my effort to reach as wide an audience as humanly possible in an effort to promote and advocate for the civil rights of all people with a disability. Until recently I eagerly looked forward to comments made by people who read my posts. I no longer feel this way and have reluctantly begun to moderate all comments.

I have been subjected to an increasing amount of hate email. I have always gotten hate email--one of my first posts that took the cure industry to task promoted some nasty comments. Initially harsh comments surprised me.  Six hundred posts later I have developed a very thick skin. My skin is being severely tested these days. I am getting email and comments that goes well beyond nasty and can only be considered hateful.  Some of the hate email I get hits too close to home. I have created an archive of this email because I am worried. I am sure my concern is misplaced but as a professional worrier I cannot stop worrying.

Two groups of people appear to hate me. First, people with a disability, mostly those with a spinal cord injury,  that want to be cured. No procedure is too risky No operation could be classified as too dangerous. Money spent on ramps, elevators and wheelchair access is deemed a waste. A cure is around the corner. Cure and cure alone is the only worthy goal I am told. My advocacy for disability rights is perceived to be the product of bitterness. My critique of the cure industry enrages people whose sole focus is on a cure for spinal cord injury. These people do not want to hear about how inadequate modern day rehabilitation is. To them, rehabilitation is not needed because they will be cured. My words are despised as is my lack of interest in cure.

The second group of people that send hate email are the parents of children or adults with severe disabilities. I have been told repeatedly that I know nothing of their lives. Like those with a spinal cord injury, they want a cure above all else and at minimum appropriate social supports. They are emphatic on this point. There is no pride in disability. The very idea of disability pride is an affront. Disability these parents assert is terrible. Worse yet, the disability rights movement has left them behind. Disability rights scholars such as myself whose identity is positively linked to disability ignore their lives and suffering.

I will readily acknowledge I have a privileged body. I am independent. My autonomy in the traditional sense of the term has not been compromised by paralysis. Basically I can wipe  my own ass and have control of my bladder and bowels. I perform all my ADLs without assistance. Pain and many other typical post spinal cord injury related complications do not affect my life or work. I am well aware many, most in fact, people with a disability encounter far greater social and physical obstacles. As a parent,  I can only imagine what it is like to watch one's child with a disability suffer. I understand how hard it must be to see snow fall and know that for days if not weeks you will be stuck inside because snow removal is inadequate. I understand life in a nursing home is a terrible thing to endure. I understand poverty associated with disability can and does kill the human spirit. I understand chronic if not life long unemployment can lead one to believe their life has no value. I understand accessing the health care industry can be difficult and frightening. I understand respite care is grossly inadequate for those that provide total care for a disabled person. I understand the never ending fight for appropriate social support is draining in the extreme.

Believe me I get it. I have been thinking about disability for the last three decades. I advocate for myself of course. But my advocacy work and scholarship is dedicated to those that cannot fight for themselves. In short, I advocate for all people with a disability. I do this because it is the ethical thing to do. It is something I will spend the rest of my life doing.

The point of the above is to ask those that have a strong or even violent reaction to my work to please think before you send me an email or submit a comment. Please do not tell me that you hope my son will be paralyzed like Christopher Reeve. Do not tell me you hope my bothers and sisters all become disabled, develop a seizure disorder or dementia. Do not tell me my parents are ashamed of me or I am paralyzed for their past mortal sins. Please do not tell me I am the Anti-Christ. Please do not tell me I am filled with rage and hatred because I cannot walk. Please do not tell me you hope I am in  car crash and die a slow death on the side of the road. Do not wish my house burns down.  Do not curse me or tell me I am going to rot in hell for eternity. All these comments have been sent my way within the last two months.

What good can come from such comments? How can I possibly respond? Criticism I get. I am happy to engage others who disagree with me. I always learn something from those who hold opposing view points. In part this is why I loved the comment section of Bad Cripple. But what I really do not get is why. Why lash out at me? Perhaps these comments are indicative of post 9/11 American culture. Dissent has somehow morphed into a tawdry if not anti American enterprise. Those that oppose the status quo are unpatriotic and possibly dangerous. I know my words can be upsetting to others--others who have an entrenched and often antiquated conception of disability. I have no doubt those that embrace a charity or medical model of disability will not like my work. I know my words can be harsh. I have taken others to task--others with and without a disability. I take no joy in this and instead am trying to make a much larger point. I use the moniker Bad Cripple for good reason. I am bad because I am not willing to bow down to others. I am capable and willing to assert my civil rights awarded to me 23 years ago by the ADA. If I was black and the year was 1950 something I would be considered "uppity". Like historic figures in the civil rights movement I advocate equality for all.
Hence, I am on the side all people with a disability. I have made this choice knowing it will not make me popular. I can live with this.  What bothers me is the hate and venom that has been sent my way by others with a disability. I am on your side. I always will be.  Question me. Challenge me. But please do not hate me.  This is a waste of time and energy. Important work needs to be done to protect and advance the civil rights of people with a disability.  Hate is counter productive.

20 comments:

Glee said...

I feel exactly the same Bill. well put.

tigrlily said...

Wow. So much for the idea that one should never say anything online that one would not be willing to say to the person's face.

People often question my assertion that there is a prevalent hatred of disability. It's hard to explain something so pervasive as that. Since Google changed their search anticipation function, I can't use the partial google search demonstration anymore. ("disabled people should..." "disabled people are...")

It's sad to think that just asserting one's civil rights and pointing out the flaws in the system would elicit such a shower of crap. But as a friend of mine says, "if you ain't caught shit, you ain't done shit."

Elle Beedub said...

Admittedly, it is hard to read about the pain caused by not giving a sh*t, when one has been guilty of not giving a sh*t (speaking from personal experience). It's no reason for these people to spew venom.

I'm happy you keep doing what you're doing. The more one knows, the harder it is not not give a sh*t. All the best to you (and to your family too; someone wishing life-altering accidents on your children is not cool)

Lisa Michelle said...

What many don't understand especially when they or an immediate family have a disability is that there isn't always going to be a cure. You are one of the mentors that I look up to on the topic of disability because you accept who you are. In the 2 years I have known you, you have helped me accept what I wish I could change but can't about my brother. And also even if a cure were around the corner for him, he may not be the Alan I raised, nurtured and loved my whole life--or the brother whose loved me unselfishly and unconditionally since the day my father brought me home from the hospital the day after I was born. He doesn't uunderstand pain,anger,hate, or misery. Only love. If there were more people in the world like him, it would be a better place. Just know you have a family who loves your and mentees' that look up to you, like myself. You have taught me how to think differently. To think about the things we can change versus the things we can't. You also showed me that one doesn't need to mess with mother nature simply to assimilate--and that "normal is relative". And that even if some cure were to be found, it doesn't work every time and the alternative to a cure could be unthinkable. Take pride in your work and don't lose faith. You taught me this as a student and helped me through my struggle with Cancer. I will always appreciate you for that, as well as for all you've done to fight for the disabled community--considering one day I will be Alan's sole care taker and without people like you to defend him things will never change.

Lisa Michelle said...

What many don't understand especially when they or an immediate family have a disability is that there isn't always going to be a cure. You are one of the mentors that I look up to on the topic of disability because you accept who you are. In the 2 years I have known you, you have helped me accept what I wish I could change but can't about my brother. And also even if a cure were around the corner for him, he may not be the Alan I raised, nurtured and loved my whole life--or the brother whose loved me unselfishly and unconditionally since the day my father brought me home from the hospital the day after I was born. He doesn't uunderstand pain,anger,hate, or misery. Only love. If there were more people in the world like him, it would be a better place. Just know you have a family who loves your and mentees' that look up to you, like myself. You have taught me how to think differently. To think about the things we can change versus the things we can't. You also showed me that one doesn't need to mess with mother nature simply to assimilate--and that "normal is relative". And that even if some cure were to be found, it doesn't work every time and the alternative to a cure could be unthinkable. Take pride in your work and don't lose faith. You taught me this as a student and helped me through my struggle with Cancer. I will always appreciate you for that, as well as for all you've done to fight for the disabled community--considering one day I will be Alan's sole care taker and without people like you to defend him things will never change.

Second Summit said...

I can't understand why folks in the disability community would object to your writings. From my admittedly limited perspective as a temporarily-abled walkie-talkie, I read your writings as holding us accountable for nonsense that no honorable culture should stand for.

The problem of hate in the comments is getting bigger, and may not be limited to folks from the disability blogosphere. Apparently there are now communities of people who gather to one-up one another on just how hatefully they can silence (or at least, try to silence) anyone with the temerity to write on the internet.

I wonder if your blog has somehow attracted their attention.

It sucks to be receiving hate-mail, and I don't know any way to entirely prevent it from stinging. If you don't read it yourself, either you delegate reading it to some other human (who will likely also be stung) or perhaps you just don't read it at all.

I wish I had some answers. But I hope you know you have a bunch of loyal readers who truly appreciate what you write.

Jisun Lee said...

I'm saddened that you're getting such hateful comments, yet I'm grateful that you're still writing with a thick skin.

I'm a parent. Not of a person with a severe disability, but still a parent who isn't considered disabled. Just the other day, I had a very tense discussion with another parent in which we simply could not bridge the gap on the cure issue. And of course, for us, for Down syndrome, such a cute isn't even remotely a reality. And yet, it seems that our positions are mutually exclusive. I felt like I was being accused of being a negligent parent for not advocating for a cure for my child's disability. This all is a rambling way of saying that your writing challenges me and reverberates with me often. I'm sorry that the price is so ugly forsomething so valuable.

Dave Hingsburger said...

After many, many, years of free comment on my blog, I too have had to start moderating comments. Mostly I have wonderful readers who engage in fruitful discussion. But those who hate me, really hate me. Their comments target my weight and my sexuality more than my perspective. Like you I think discussion and disagreement are wonderful. I've changed my mind because of some of the comments, I've rewritten blogs because of a point raised in the comment section. I'm open to disagreement but not to hate. Trouble is, I have to read those comments in order to delete them. Do people think that I won't feel in reaction to what they say, or is hurt, really hurt, their intention. If it is, they have larger problems than just what I say.

B Burton said...

I am very sorry you have been the recipient of such hateful comments. You do not deserve them. There is room in this world for different thoughts and ideas and we should be able to express them safely and without fear of repercussion.

If someone could cure my hearing loss I'd be pretty happy. But knowing such a cure won't come in my lifetime, I will be an advocate for accessibility and inclusion. Even after such a cure appears I hope there will still be such advocates.

Please Bill, keep writing.

Moose said...

I knew a woman who became deaf after an illness at a very young age. Her parents refused to accept that she was deaf and was sure that some hearing aid, some surgery, some cure was just around the corner. They refused to let her learn sign language or to read lips, and kept her away from the deaf/hearing-impaired community because she wasn't "really one of *those*." As a result she didn't start learning proper ASL until her teens and was left out of both the hearing and hearing-impaired worlds.

Yes, some deaf people hear again. Some paralyzed people walk again. Some people get an Olympic gold medal, too.

Part of the problem, I think, is our culture of putting the few who do the impossible on giant pedestals and worshiping at their feet. It's part of the whole "disability inspiration porn" thing I'm always railing about. "See, this one guy did it, why can't you? What's your excuse?" My excuse is called MATH. If one person in a half million does it, those aren't good odds. If getting an Olympic medal was something everyone could get if they only "tried", everyone would have one.

I also suspect that part of their anger is internal. They recognize that they, their child, their sibling, whomever, is not getting magically healed. They want it so badly they're focused just on that. They are staring at the tree so hard they can't see the forest around them. And they're furious -- with the truth, that they just don't want to accept. Sometimes it is hard to see the truth because we see it as some kind of failure. The hard part is learning that it is not failure to see and take a different path. It's not failure to see that the rest of the forest has been chopped down, and staring at the one tree isn't going to keep it from being cut. Sometimes it is just time to move on to a different path.

SB from Friends For Life Alliance said...

Those who are fixated on a cure cannot accept themselves as they are. You challenge that, hence the hate mail. Regardless of how abled we are, all of us have to accept our failings, weaknesses and imperfections if we are to move forward.

Isis said...

I am really sorry that you are dealing with these hateful comments.

I want you to know I really really really really appreciate what you do in writing this blog, in interrogating concepts around disability, in describing your own experiences, in dealing with disability history and its importance to the present, and so on, and so on. I always look forward to reading your blog, even though much of the material you deal with is very difficult.

And I'll add that as a person who deals with a disabling chronic illness, the writing that you and others have done to challenge the dominance of "the cure." I've struggled with this issue as I grapple with my own situation in disability, and I struggle with the repeated comments of friends and loved ones, always hoping and wishing for a cure--which is always such a hindrance to my own need to come to terms with my own disability.

All this to say: Thank you. And to echo the comments of others: please Bill, keep writing.

Mary Ann said...

I suppose any writer who puts himself or herself "out there" has to expect a certain number of negative reactions. But what you describe here is fundamentally uncivil and savage; there is no reason anyone should be subjected to such treatment anywhere. That these comments are clearly written by those who are unaware of your situation and the full nature of your thinking about disability just demonstrates that . . . well, that people can be very stupid. If they had bothered to read your blog they would know better.

I hope that moderating your comments at least keeps this contamination from your blog, and that the loss of an opportunity to go public with venom discourages some of the worst comments.

We have a lot to learn about treating each other well online, but your blog presents a wonderful venue for such learning. I hope you won't be disheartened.

Mary Ann said...

I suppose any writer who puts himself or herself "out there" has to expect a certain number of negative reactions. But what you describe here is fundamentally uncivil and savage; there is no reason anyone should be subjected to such treatment anywhere. That these comments are clearly written by those who are unaware of your situation and the full nature of your thinking about disability just demonstrates that . . . well, that people can be very stupid. If they had bothered to read your blog they would know better.

I hope that moderating your comments at least keeps this contamination from your blog, and that the loss of an opportunity to go public with venom discourages some of the worst comments.

We have a lot to learn about treating each other well online, but your blog presents a wonderful venue for such learning. I hope you won't be disheartened.

Alicia Butcher Ehrhardt said...

I'd love a cure for some of my disabilities - others I will be stuck with for longer than I can live waiting for the 'cure' to come. If it comes.

This doesn't mean that right now, while I still have them, I shouldn't be able to advocate for what I need (and I do).

Unfortunately, if a parent spends all her energy advocating for a cure, that energy is not available for dealing with reality - help she CAN give, that the child needs now. This is bad for the child.

Keep pushing - and, as a writer with a disability, keep writing. And always, always moderate comments. When the haters get through, they get encouraged.

Alicia

Middle Child said...

Bill, I am sorry people have not seen what you are on about. It makes perfect sense to me. And strangely the hate that is aimed at you comes from a lacking in reflection in these people as to why they are so upset. We experienced this Hate in person because like you Don did not fit the mould of "a cure is around the corner" so bugger the ramps etc...he paid for ramps when he could so he and others could access the CBD of our small town - and some actually claimed he did it for attention - he did it so he could be independent, and others as well. If they truely are so het up with hate, just don't read... constructive criticism is good because it usually shows a mind that is trying to work things out, but hate mail - shows as mentioned that there is something seriously wrong inside them. I don't think you need worry physically that someone will harm you... but wise to be watchful in other ways. Keep up what you are doing...maybe one day this blog could become a book...it has value

Middle Child said...

Bill, I am sorry people have not seen what you are on about. It makes perfect sense to me. And strangely the hate that is aimed at you comes from a lacking in reflection in these people as to why they are so upset. We experienced this Hate in person because like you Don did not fit the mould of "a cure is around the corner" so bugger the ramps etc...he paid for ramps when he could so he and others could access the CBD of our small town - and some actually claimed he did it for attention - he did it so he could be independent, and others as well. If they truely are so het up with hate, just don't read... constructive criticism is good because it usually shows a mind that is trying to work things out, but hate mail - shows as mentioned that there is something seriously wrong inside them. I don't think you need worry physically that someone will harm you... but wise to be watchful in other ways. Keep up what you are doing...maybe one day this blog could become a book...it has value

Selene said...

I'm catching up on your blog and wanted to stop and say I get a lot out of your words here, and hope to read heaps more of them! It's easy not to comment to support someone. So here it is, then! Thanks!!

Nessie Siler said...

William,

I must tell you, you are a mentor of mine as well. I look up to you , and feel encouraged to carry on in my work as an advocate for disability rights and inclusion. Please keep writing. Those who hate obviously do not understand. Such attitudes reflect poorly upon them, not upon you who are doing your utmost to give a more nuanced view of the causes for our struggles.

Nessie

missjewel22 said...

You are my hero. You say what this world isn't ready for- the truth!
No fluff here-which I find remarkably refreshing.
Julie
Missjewel22@ gmail.com