You are Hispanic, black or Asian. You have a heart condition and need a heart transplant to live. You visit a Major Hospital and meet with A Major Cardiologist, and then you receive a letter in which the doctor has recommended against the transplant "given your ethnicity, the complexity of the process, multiple procedures and unpredictable effect of steroids on behavior."
Now imagine this:
You are watching the recent Comedy Central roast of Roseanne Barr. Wayne Brady turns to fellow comedian Jeff Ross and jokes, "A lot of people hate you, especially because you remind us all of what a Jewish person will look like when he's 40!"
Mind-boggling, right? What hospital would blatantly deny a person because of their ethnicity? Which comedian would crack a joke like that about a Jewish person? Sure, plenty of comedians are equal-opportunity offensive (as Wayne Brady has been), but good ones wouldn't jest that an entire ethnic group is ugly because it's just not funny.
Now know this:
Paul Corby is a 23-year-old with a defective heart and high-functioning autism. He lives in Pottsville, Pennyslvania, and applied for a transplant at the Hospital of the University of Pennyslvania, as reported in The Philadelphia Inquirer. Last June his mother, Karen, received a letter from a cardiologist there who recommended against Corby getting a heart transplant "given his psychiatric issues, autism, the complexity of the process, multiple procedures and unpredictable effect of steroids on behavior."
At the Comedy Central roast of Roseanne Barr, as seen here, Wayne Brady turned to comedian Jeff Ross and remarked, "A lot of people hate you, especially Sarah Palin because you remind her of what Trig is going to look like when he's 40!" Some audience members boo-ed.
That cardiologist saw nothing wrong with denying a person a chance to live, in part because of his special needs. That comedian thought it was amusing to slam an entire population of people, those who have Down syndrome. Both thought it was OK to discriminate against, or demean, people with disabilities—even though they most likely wouldn't have gone to the extremes they did based on a person's race or ethnicity.
Once again, I'm reeling from prejudice against people with special needs, and dreading what the future might hold for Max.
I'm not downplaying racial prejudice in America: Intolerance and hate still exist in too many people's hearts and heads (hel-lo, Ku Klux Klan rallies). What racism and disablism have in common is that both are about closed-mindedness and ignorance, and both are hurtful and painful. One major difference: Americans are largely aware of racial intolerance. It's an issue good people form groups about; our town has a community coalition on race. We teach our kids to be open-minded and accepting from a young age (well, hopefully we do). Even when people have racial prejudice, they may well know not to let it show. Not p.c.
The same can't be said of disabilities in public discourse and perception. Ableism, disablism, whatever you call it: It's out there, and it's blatant. People freely use the word "retard" as a joke or punchline, including otherwise "sophisticated" people I know (and some fight you on it when you explain why it's demeaning). In the year 2012, experts still consider disability one acceptable reason to deny a transplant (as also happened when a CHOP doctor advised against giving little Amelia Rivera a kidney transplant because she had "mental retardation," although the hospital eventually agreed to it). Last month, a group of Chicago suburbanites opposed to a group home for eight women with intellectual disability stood in the village chamber council and called the proposed tenants "retarded." They could harm kids in the neighborhood, some mused.
What I'm saying is: There is good awareness out there about respecting people of different races and ethnicities—and too little awareness about respecting people with different abilities. "Discrimination against disabled people is the last remaining equality issue to be addressed," noted commentary on a series of British ads (including the above) geared toward disability awareness. It's true here, too.
In July, Iowa Senator Tom Harkin, chair of the Health, Employment, Labor and Pensions committee, issued Unfinished Business, a report that noted disability employment has lagged over the last two decades, and that people with disabilities participate in the workforce at a rate that's half of any other group's, including women, African Americans and Latinos.
Harkin's call for the government and business to make hiring of disabled people a priority is heartening. Still: How are we going to convince business people that, yes, people with disabilities can be just as abled as anyone else in many ways—and just as valuable as anybody else? How are we going to convince doctors, those who laughingly call other people retarded, the strangers who stare at my son as if he were a freak of nature? How are we going to change perceptions of those with disabilities?
I do my best to help others quit focusing on Max's cerebral palsy and see the amazing kid he is. When friends use the word "retard," I tell them it's offensive. But that's me, Max's mom. The truth is, unless you have a child or adult with special needs in your family or circle of friends, or you work in the field of disability, or you read a shocking story in the news, this is most likely not stuff you ordinarily think or talk about with your kids, partner, friends, whoever.
Without that awareness, and more open and prolific discussion about treating people with special needs as equal members of society, kids and adults with special needs will continue to be punchlines and pitiful creatures. Doctors will continue to think that individuals with disabilities don't deserve transplants. People will continue to innately believe that those with disabilities are less worthy human beings.
Please, won't you keep the discussion going?
Update: Wayne Brady issued the following apology on his Facebook page on 8/17; I think it's a good one.
This letter has taken me a few days to compose because of the conflicting emotions that I'e experienced since the day of the Roast and its subsequent airing. The environment of the Roast is a comedic (hopefully), tasteless (mostly always) affair that encourages everyone to out-filth eah other. Not normally what I'm known for, right/ But when I was invited I jumped at the chance to play outside e of my perceived "norm" and have fun. The Jeff joke was written for me and at the end of the day I take full responsibility for saying it. It wasn't meant as a slam to Trig and at the time I didn't see it that way.
I could defend it as a performer, but I would rather apologize from the bottom of my heart as a father. I understand how a parent, who loves their child, who tries to nurture and shield them when they cannot defend themselves, would take offense.. I have many times experienced this feeling. I've had awful things said about my daughter.. Violent and most times racial stabs. Being in the spotlight I have built a thick skin to these sorts of things. My daughter ( who's now old enough to understand ) is another story. That being said I write this letter with sensitivity and a strong stance of responsibility for my actions.
I thank everyone who's expressed their opinion for reminding me that my voice is heard... It's easy to forget sometimes in front of cameras and lights.
To the Palins, please know that no malice or harm was meant. To the other families who were touched negatively, I hope you'll be able to accept this apology as well.
I've always said that people in the public eye should be held responsible for what you say and I'm no hypocrite. Thanks for reading and letting me express my side.
Take care all,
Of course a white lady wrote this, no minority would have due to the inherent differences between race relations and intellectual disabilities. Not sure what to say, just surprised and let down. Of course people like your son deserve transplants, dignity and so forth, but you could have argued your point better. If you have to mention that you aren't trying to offend or downplay something, you already have. Find a new way to fight the good fight, start by reminding society of the self evident truths, that all people are created equalReplyDelete
Honestly Ellen, I think this misses the mark. There are serious discussions to be had about the criteria for transplant that includes the expected ability to follow the requisite medical routine througought life once one becomes an adult. There are good arguments to be mustered about whether this criteria is a good or fair one and whether its discriminatory effect against many disabled individuals makes sense. However, acting like this is merely the same as discriminating against ones ethnicity lacks intellectual honesty. If you want a discussion of the subject, deal with the truth that disabilty and mental illness may in fact impede the ability sought by this criteria (in a way no ethnicity does) but that the criteria itself is not a good one.ReplyDelete
jtj, I'm sorry you completely missed the point of my post. Anon, obviously there are many criteria for getting a transplant. Disability should not be one of them, and if there wasn't inherent discrimination against people with ID in our society, it wouldn't even come up.ReplyDelete
I could be wrong, but I think that Ellen was trying to make the case that a person shouldn't be denied a transplant based on his/her "special needs" diagnosis alone. It is true that every potential organ transplant patient needs to be thoroughly evaluated prior to being listed. Not every person can handle the demanding post op care that comes with receiving a transplant. I know this, because I have taken care of my fair share of "neurotypical" patients who began to reject their organs after refusing to take their medications because they "just didn't want to do it them anymore". The bottom line is, we parents of children who have special needs simply long for our kids be treated as the individuals that they are. To write in a chart that a child is being denied a transplant simply "due to Down syndrome" or "due to autism" implies that no one with DS or autism is capable of medical compliance & that is simply not the case. As for Mr. Wayne Brady, Trig Palin jokes weren't funny four years ago, why he thought that they'd get a laugh in 2012 is beyond me. I mean, how tasteless do you have to be to get booed at a Roseanne roast for Pete's sake?? It's time for Wayne & the rest of Hollywood to educate themselves. Their ignorance isn't funny, it's embarrassing.ReplyDelete
I absolutely agree with you, Ellen. I have 2 sons that are disabled (Autism and PTSD), and I would hate to think anyone would be so cruel as to make comments like have been made or deny essential supports and life saving operations. Frankly, I think it's sad that we even need to remind people about things like this...shouldn't we be better than that?ReplyDelete
I didn't miss your point. I agree with your main point. It was the execution of your argument that I found flawed and offensive. Sorry you missed the point of my previous comment.ReplyDelete
SO...jtj... what I get from your reaction is that you believe that the ignorance toward different races and religions is somehow different from the ignorance that is toward people with disabilities?ReplyDelete
for me it is exactly what you are saying, and you drove it home by starting with " Of course a white lady would write this." She knows of discrimination just as much as you do, she's a WOMAN and she he has a child with a disability. No one person's pain in this area is more than another.ReplyDelete
I think Ellen needs to learn to take criticism gracefully.ReplyDelete
But with all the berating in thw world, it's hard to tell if it's supposed to be constructive criticism or an insult.Delete
Hi, I am a physician, and a mother to a child with autism , I just want to say, the acceptance and rejection for a transplant decision should be approved by the medical ethics commit in the hospital.ReplyDelete
Not only the cardiologist openion, but the approval of the medical ethics commit what really disturb meReplyDelete
I can see already that the comments here may get contentious. I'm going to ignore that and comment on the spirit of what Ellen wrote--because she is dead on. Otherwise "enlightened" people are prejudiced against people with disabilities, and the public conversation that should help us all be better and more accepting is no where near as good as it should be.ReplyDelete
I think it really comes down to visibility. It's the people who don't have a personal connection to someone who is disabled that are most likely to discriminate. They're afraid or uncomfortable with disabilities or they simply underestimate the contributions that disabled people make to our communities.
Like Ellen says, we need to talk about it, we need to push for inclusion--because once someone has made a human connection with a disabled person it gets a lot harder to discriminate.
There is an extreme shortage of organs for transplant. This is a fact. In an ideal world everyone could get everything. We do not live in an ideal world.ReplyDelete
Similarly, it is disingenuous to suggest that "people with disabilities are just as abled as anyone else". I like when I see disabled people in jobs. I think it is important to them and to the community.
However, I always have to help the young woman with Down Syndrome who packs my groceries, since she will always put my bread or eggs at the bottom and heavy things like apples on top. She doesn't separate the freezer stuff from the cabinet stuff, although I have done this with her many times.
So, while she has a job, which is great, it is not an independent job. She really is not as "abled as anyone else". It just isn't true.
We'd all like to think that everyone can do everything or have everything, but I'm never going to be an Olympic gymnast either.
Stephanie, are you a minority? No? Then don't tell me, a minority how I should feel about racism until you have lived with me, a minority in the Heart of Dixie. Live a say in my life and then we will talk. It is one thing to be discriminated against while being a neurotypical, able bodied human being with dark skin or a different religion. Yes, Ellen is a woman, a white one. FYI: She still outranks me on the social ladder.ReplyDelete
Suzanna, I respectfully disagree with you. Life, in every form, has dignity and demands equality. I agree wholeheartedly with Ellen on her main point, just not her way of defending her stance(very offensive). Society must recognize that no one life has more meaning or purpose than another. "We hold these truths to be self evident, that ALL (wo)men are created EQUAL." Arguement over. Without offending anyone, I might add.
You can't discriminate FOR without discriminating AGAINST.ReplyDelete
Em, Ellen is talking about being an advocate and achieving equal status for a repressed segment of the population, what's your point?ReplyDelete
jtj, I just realized that to explain what I mean is way too long for a comment. I bow out of the conversation and retract my previous comment.ReplyDelete
So, again, let me get this straight. You are saying that...in the world YOU live in... the discrimination you receive is more hurtful and demands different, unequal( in one way or another ) attention than the discrimination that my son faces for being disabled? I do not see your point other than being angry that a white woman talked about something that you believe she knows nothing about , racial discrimination. To me, YOU are the one being offensive by downplaying the severity of discrimination against the diabled when paralleled with your own discrimination. FURTHER, HOW DO YOU KNOW I'M NOT A MINORTY? Because my skin LOOKS white? What a snap decision in JUDGEMENT you made there.ReplyDelete
Kate- I completely agree. Anytime anyone has ever been uncomfortable about being around my son for the first time has always had little to no contact with another person with a disability. We need to advocate and include. The other commenter that talked about a bagger at a grocery store sounds like they have the emotional maturity of a pre teen. I too worry about my son amongst all of the nitwits out there.ReplyDelete
Yes, racism is different. My son is disabled and a minority. I have lived the difference. They just are. Yes, someone who knows nothing about you looked at the color of your skin and made a judgement about your race and treated you in a way you didn't like. Welcome to the world I live in everyday. Is it any different that the way people see your child with a disability? No. Is the history of racism different than the history of discrimination against minorities? Yes, very. So don't compare apples to oranges, that's all I am saying here.ReplyDelete
Stephanie, I find it very sad that you think slavery, lynchings, beatings, unequal education, etc. faced by my ancestors is as severe as the way your son has been discriminated against for being disabled. Has your family lived in fear of a KKK group burning your house down? Do you know of people who have been murdered or had a cross burn on their front lawn for advocating for special needs? No? Then they are NOT the same. Our family has felt the sting of prejudice against our boy with cerebral palsy. It is painful. We get mad. But it is not on the same level as the pain and suffering endured by my family in the days before Civil Rights. So stop comparing them.ReplyDelete
I have not personally experienced any of the aforementioned situations listed above. But they did happen to my grandparents and other older family members. It is engrained on the memory of blacks everywhere. I personally would never compare the Holocaust to slavery and Black oppression in America out of respect for survivors and Jewish people as a whole. People need to keep things in perspective and advocate without pretending to know another's pain and suffering. Until you walk a mile in their shoes, you never really know.ReplyDelete
jtj, I believe it is possible to make some comparisons here. I'm not discounting your experiences or discrimination you (and countless others) have faced; I'm saying that we have an ongoing discussion in this country about race (even as racism still exists) while there is less awareness and discussion about disablism.ReplyDelete
Suzanna, people with disabilities CAN be as abled as anyone else; perhaps you need to redefine your idea of "abled." And while it's true there is an extreme shortage of organs, having a disability should not be a criterion for whether or not you are eligible. Period. Why should an adult with autism be less eligible than, say, an adult who's a jerk?!
Stephanie and Kate, thanks for getting it.
Ellen, when you compare them to the prejudices you have faced with Max you are leveling them to serve your own purpose. You cannot level two separate human experiences. We can create equality in better ways. Yes, racism exists, prejudice against the disabled exists and we can unite the HUMAN struggle here, since we are ALL created equal. Just stop comparing the two different struggles, all it will do is alienate.ReplyDelete
jtj - I don't understand why you are saying she's compairing lynchings and house burnings and slavery to the discrimination against the disabled. You are getting way too defensive over the topic. I understand the topic means a lot to you, but she wasn't comapring THOSE PARTICULARS to the discrimination against the disabled. YOU ARE. Can you put that much furvor for this topic into fighting for your child's equality? Can you? PLEASE?ReplyDelete
Ellen, Most of the differently abled people of whom you speak, whether they have Down Syndrome, Cerebral Palsy or Autism, cannot do a job without a second person helping. In other words, two people are required to do the work that could usually be accomplished by one person.ReplyDelete
Is it fair to ask an employer to pay two people for the productivity or work of one? It's fine if an employer would like to do that (for jobs that are appropriate, and many are not), but by no means should it be a requirement.
It's difficult, I know. I have a friend with a 25 year old high functioning autistic son. He's been trying to find work, but cannot work independently, and no one has been willing to hire a "mentor" too. In these tough economic times, it's really a difficult situation.
Stephanie, I am not going back and forth with you again. You are not getting it. And for the record, I much forth much more fervor than a blog discussion when advocating for my son. Not that it's any of your business, but apparently it's important go you know.ReplyDelete
"Most of the differently abled people of whom you speak, whether they have Down Syndrome, Cerebral Palsy or Autism, cannot do a job without a second person helping"....this is absolutely UNTRUE. My Kroger near me hires a ton of people with disabilities. Just because someone can't bag fast enough for you doesn't mean they CAN'T DO IT. ugh some of the people commenting on here are downright disgusting people. Just because you know ONE PERSON who is disabled looking for a job, doesn't make you an authority on every single disabled person looking for work. Shame on you. Rude , offensive, and backward. I can't look at these posts anymore today, I have too much to do and my bloog pressure is going to get dangerously high from all of the ignorant. Ellen, I love the post. It's open , honest, and you speak you mind. LOVE IT. PS it isn't surprising that a man is the first one to comment negatively on such a post. Keep them coming I love your blog :)ReplyDelete
I do believe that Suzanna is illustrating Ellen's point, albeit unintentionally. Suzanna assumes that people with Down syndrome ,CP, Autism, etc, are unable to complete tasks independently simply because they have diagnoses. So not true, Suzanna. This type of attitude just further demonstrates the need for increased awareness about people who happen to have special needs. By the way, I've had a young, "typical" grocery bagger attempt to stuff heavier items onto my eggs, bread, etc too. I corrected him, probably in the same manner in which you corrected your bagger who has special needs. Guess what? The experience didn't ruin my day or even my shopping trip, for that matter. Have a little patience & compassion, Suzanna...you never know when you might need some thrown your way. Just sayin'...ReplyDelete
And then "Holier Than Thou" Stephanie makes a sexist comment while trying to be taken seriously in an adult conversation. Didn't you accuse me of being Insensitive to the fact that Ellen is a woman in a previous comment? Pot meet kettle...... I certainly hope that the people you go up against while advocating for your son are more mature, open minded, and empathetic than you are.ReplyDelete
Thanks for writing this post Ellen.ReplyDelete
jtj - I might have an interesting perspective for you. I am both a minority AND a mother of a special needs child (you can take a look/read about our family here: http://www.todaysparent.com/blogs/special-needs-parenting
I've been discriminated against for being South Asian and being a woman. In the past 23 months, I've also bore the brunt of discrimination against my daughter who has Cerebral Palsy.
In my opinion, discrimination is discrimination. And while the discrimination against me always hurt, I have the ability to stand up for myself. The discrimination against my daughter hurt so much more because she is my child and she doesn't have the ability to stand up for herself. And you know what? When I hear of other people that are discriminated against for any kind of disability (child or otherwise) it hurts equally as much.
We hear about racism all the time. I live in a multicultural city in Canada and it is not often that I hear a lot of racist comments. But people hurl the word "retard" around like it is a synonym for stupid (which it is NOT). It's reasons like this that make me applaud Ellen's efforts for keeping the conversation going.
OMG! Where do I start. I sometimes leave a doctor's office in complete shock for the comments they've made about my daughter Mary. She is 53,adopted and has Down Syndrome. We live in Arkansas, moved here from Massachusettes, and I thought the ignorant comments were because Arkansas isn't as progressive and the doctors not as informed. A few years ago a Gastroenterologist told me that even if Mary got cancer he wouldn't treat her because she couldn't handle it. He had known her all of 5 minutes and he based his comment totally on the fact that she is nonverbal and he couldn't communicate with her. He didn't stop there; he proceeded to tell me that she had outlived her life expectancy anyway so . . . . I was so in shock that I couldn't say anything and couldn't wait to get out of his office, never to return again.
Last year Mary's arthritis worsened and we went to a Rheumatologist to have her checked out. She seemed afraid to touch Mary, stayed as far across the room from her as she could get and said to me 3 times, "If you don't want to treat her at all I would understand." Again, dumb founded, I just stared at her. I want to get irate and cuss them out, but I was raised by an old-school RN that viewed doctors as gods and I can't seem to get totally past that. Again, we left never to return again. This is just a small example of the insensitive things medical professionals have said to me.
I don't know whether to be relieved that this treatment we receive isn't just because we live in a very non-progressive, conservative state or not. I think I'm very disheartened to know that it is also happening in the more progressive, considerably more liberal areas of our country. We are supposedly one of the most progressive countries in the world, why can't we get over this prejudice? There are so many times I want to tell people that say horrible things to us that I hope they are never blessed with the opportunity to raise a disabled individual because they certainly don't derserve it. I have told people that tell me they just couldn't do what I do, that is why Mary is with me and not them.
On the more positive side, there is a wonderful Geneticist in Little Rock who is specializing in aging people with Down Syndorme. His name is Dr. Kent McElvey and has a clinic for people of all ages with Down Syndrome that is affiliated with University of Arkansas Medical Sciences. He feels that his first priority is to educate doctors of all specialties and general practices on how to work with the disabled community. He said he was a general practitioner before specializing in genetics and feels he didn't do a very good job of treating people with disabilities because he was never taught that there is a difference. He doesn't want that to be an issue any longer. He gives me hope. At least one person out there in the medical field understands that doctors are not the know-all-end-all.
I've gotten on a role and don't know how to wind this down. I work for an agency that is a state vocational rehabilitation office and we help people with disabilities find work, get training and provide medical treatment if needed to help them retain work. I am sending this post to all my coworkers so they can be as irate as I am. Thank you so much for helping me not feel so alone fighting the fight by myself.
August 16, 2012 2:47 PM
I agree that comparing racism to what people with disabilities face is just wrong. You cannot compare the two as they are so totally different. Just because both face discrimination doesn't mean they do so on the same levels. I do "get it". I also have a little girl who is profoundly disabled. She will NEVER be able to do everything everyone else can do. This is not due to discrimination, it's due to her physical and mental challenges. I fully agree that people with disabilities need to be given the chance to achieve everything they are capable of whether in school, at home, or in the work force. That being said, parents must take off their blinders and realize that sometimes it just isn't possible. And that is also okay and does not take away the worth of the individual. Admitting that my daughter cannot do all the things that someone without a disability can do does not mean I have "disabilism". That being said, I think that in the medical field, it is disgraceful to use someone's disability as a reason to refuse treatment options that would otherwise be offered to them. This is an obviously tough topic, good to talk about and hear all points of view, but being antagonistic towards each other because we have differing opinions on the subject serves no purpose. I personally can't stand the term "differently abled" because I see absolutely nothing wrong with saying that my daughter is disabled, however I still respect that you may not like that term and choose different wording for your son. The good news is, whether or not we agree on everything, we ARE talking about it! That is a step in the right direction.ReplyDelete
I decided to read some of the other comments and I'm terribly confused. What are all of you arguing about and why? It's all gotten a little petty and away from the real issue. I deal with disabilities of all kinds every day. I live in the south in the bible belt. I work with disabled people, have a disable adult child, I have friends who are gay, I have a friend from Zambia who moved into a new house and the police were called because the neighbors thought she was breaking into her new house with her 3 children under the age of 6. I live through all kinds of predjudices that are not only aimed at me and my daughter, but my very close friends. Stop arguing and work together against all prejudice of all kinds.ReplyDelete
Great post! Thanks!ReplyDelete
Jesus came to the earth for the least of these, not the most. He came for the middle class, the poor, the sick, the disabled, not the wealthy religious leaders. The creator of this blog is living proof. I'm 12 with PDD NOS and love that Max as God loves us.ReplyDelete
Cognitive ability and race are not the same thing. Of course Max deserves to treated with respect and dignity, same as anyone else. And yes, a discussion about how to achieve this needs to happen.. However, having an intellectual disability is not the same as being of a different race and frankly, it makes me sad that you can't see that. Doesn't help your argument much either. I follow your blog and cheer for Max as much as anyone else, but this post disappointed me.ReplyDelete
If I may, I'm a hispanic mom of a surviving 25 week micro preemie that is living with multiple disabilities as a result of said premature birth such as CP, epilepsy, CVI and more. I feel as though I understand Ellen and jtj and the rest of you that have commented. I've experienced prejudice from non-hispanics AND from hispanics because of my ethnicity and my daughter, husband & I from many other people of all races, ages and creeds because she is obviously disabled (the wheelchair she uses is the 1st giveaway). However if we want to get down to the heart of the matter & if we want to minimize the able-ism we must speak up and initiate conversations...the ones making the r-word/disabled jokes certainly will not because they are obviously afraid or uncomfortable thus using people living with disabilities a punchline as a defense mechanism. So let those of us that believe ALL people of ALL abilities were created equal take the initiative and make the difference ourselves. Just like any other cause with enough people behind it a difference and impact WILL be made and people WILL take notice and, hopefully, public perception WILL change. All pettiness aside it's about those we love and care about living with whatever diagnosis...let's not forget about that. That's just my opinion.ReplyDelete
Allow me to correct myself...I feel as though I have SOME LEVEL of understanding of you all...I can't possibly actually understand each of you and/or what you're going through or have gone through because you all are each incredibly unique and wonderful people. Just wanted to clear that up in case it came off wrong...it made me scratch my head when I reread it so...lol! :)ReplyDelete
I didn't get the impression that Ellen was comparing the levels of suffering caused by racism vs. hatred of disability -- more just the hatred of something that is an inherent part of a person (skin colour, intellectual ability); and the notion that a human being can be somehow less than human.ReplyDelete
There are places in the world today where disabled babies are left to die/abandoned and those who survive can't go outside because they'll be stoned or spit on. Our magazine is doing a story about some moms of kids with disabilities in a town near Nairobi who face this.
When we adopted our two kids from Haiti, we didn't "see" any kids with disabilities in public on any of our trips there. We visited a home for kids with disabilities where we were told the kids can't go outside because they're viewed as a curse. They've been abandoned and no one visits. Some of the kids had VERY MILD disabilities.
Between 1939 and 1943, 6,000 German children with physical and intellectual disabilities were killed through starvation, exposure to cold, poisoning and lethal injection. Over 70,000 adults with disabilities—including intellectual disability—were gassed to death during early WWII in six killing centres set up for the purpose.
Last month a father in Pakistan buried his newborn disabled daughter alive. There are growing hate crimes against people with disabilities in the west (numerous murders, often by groups of youth who get their kicks killing a person with disability). According to a study commissioned by the World Health Organization and published in The Lancet last month, children with disabilities are nearly four times more likely to endure physical abuse than their non-disabled counterparts. This was based on a survey of 17 studies in high-income countries like the US, Sweden, Finland and Israel.
In a 2006 journal article that surveyed 94 obstetrical and pediatric professionals in a hospital in France all indicated they would agree to have their own newborn child's life actively terminated through euthanasia for conditions including Down syndrome, intellectual disability or lack of one arm or leg, among other disabilities. One doctor wrote on the survey: "no handicapés are allowed."
A quick google search led to this historical look at abuse of the disabled (see below). Anyone who thinks hatred of people with disabilities and violence against them isn't a serious worldwide problem has their head in the sand. We don't need to make any comparisons to abhor this.
History is replete with examples of disabled people worldwide being
ridiculed, killed, abandoned to die or condemned to permanent
exclusion in asylums (Pritchard, 1963). Anang (1992)
claims that the Greeks abandoned their disabled babies on hillsides to
die while early Chinese left their disabled people to drown in rivers.
In Europe, Nero Commodus is said to have targeted bow and arrows
on physically disabled individuals and the Church in the 15th century
sanctioned the extermination of disabled persons (Durant, 1944;
Coleridge (1993) traces through history the killing of people with
disabilities, beginning with the Spartans who killed disabled persons
as a matter of law; the endorsement by Martin Luther to kill disabled babies because they were 'incarnations of the devil'; the English
eugenicists who eliminated disabled people under the Darwinian
evolution theory of the 'survival of the fittest' and the Nazi Euthanasia
Programme under Hitler to exterminate disabled people as they could
not make any contribution to society.
To me, discrimination is discrimination. We should all stop fighting over who has it worse and just try to stop it ALL!ReplyDelete
Just this week one of my uncles made the mistake of including me on a chain e-mail that was very racist against Muslim people. I hit "reply all" and told him off for everyone in on the e-mail to see.
Last time my son was at Spina Bifida clinic at the hospital, I was talking to the Rehab doctor about ordering HKAFO braces for his legs so that he could start working on standing, and eventually maybe walking (he's in a wheelchair and doesn't walk, so far) and the doctor laughed a little and said, "You Spina Bifida parents! You all want the same two things -- for your child to walk, and to reproduce!" He said it like I was crazy to want that for my child! Like I had my head in the clouds thinking my perfectly capable son could ever possibly walk or maybe have a family someday! Like he didn't deserve any of that because he has Spina Bifida and should just sit in a wheelchair and live with me his whole life.
To me, both these instances were unacceptable. Though I am neither Muslim nor physically disabled myself, they were both equally infuriating and offensive to me. That's what we need to focus on - calling this kind of stuff out as unacceptale, no matter who the person is being discriminated against. Good job, Ellen!
I am enraged to hear that people with special needs may not qualify for transplants simply because they have special needs. I understand there is a qualification process for organ donation. These organs are precious, and you would want to make sure that they take, and can be viable. However, not knowing how it will affect someone's behavior or assessing people's value as a human candidate based on a bias of ability doesn't seem appropriate. The comments against people who may need assistance to work enrage me the most- there is no reason to lump all people with special needs into the "needs extra assistance" category as she has. Many people with special needs function in society independently, and some people do not, each person requires different things, and this goes for people with special needs and without. This woman had one experience with someone who needed extra assistance. So what? Don't we all need training, or assistance at one point or another? A doctor is a resident before she works on her own, a teacher is a student teacher before he has his own class- why isn't she upset about this? Yes, this woman may need training for longer than certain people may deem "acceptable," but everyone learns at their own pace. And hey, she's very worried about this tough economy, doesn't hiring this "mentor" create new jobs?ReplyDelete
Everyone has a history. Every person can connect the dots to a time in history when their race, religion, ability, job, or lifestyle, has been discriminated against, tortured, misunderstood. History has always been discussed, or used as a metaphor. I am grateful that I haven't lived that history, and I don't pretend to know what slavery, the holocaust, Willowbrook, etc, were like. I do know that it's 2012 and it's time to love and respect everyone for their abilities. It is time that we look at discrimination of people with special needs as seriously as we look at people who are discriminated against because of their race, religion, or sexual preferences. The second we start playing "who had it worse" we discriminate.
Wow, lots of discussion here. I was going to comment on the horrendous treatment of people with disabilities in other areas of the world and in America's not-so-distant past but Bloom beet me to that one. And she did a far better job that I could have.ReplyDelete
The only other comment I had was to ask you a question, Ellen. You mentioned statistics that people with disabilities participate in the workforce at a rate that is half of any other group. I'm curious whether those statistics take into account the number of people with disabilities - whether physical, intellectual, or psychological - that truly are never capable of entering the workforce. It's unfortunate, but there are some people who are so profoundly disabled that holding a job is truly impossible. If the statistics do not account for that fact, they may not be overly helpful. Now I realize that trying to quantify who can and can't work would be extraordinarily difficult and would open up a can of worms regarding discrimination and the undervaluing of people with disabilities. But if, say 10% of the disabled individuals accounted for in those statistics are unable to move from their bed or are catatonic or are profoundly immuno-compromised or any of a number of other situations that would prohibit them from working, it would skew things. With medical advancements being what they are and humans having the ability to preserve life in ever-more-fragile situations, this could be a growing number. That could potentially mask progress that is being made and present a far bleaker picture than actually exists. I don't know if that's the case or not. But I believe that statistics that are based on, for example, people with disabilities who are actively seeking employment (or who would but for previous discrimination) would provide a better idea of where we are and where we need to go.
I really enjoy your blog and following along with Max's adventures and victories. As someone who works with disabled individuals, articles such as yours allow me to better understand my patients and their families and help me to relate to them on a deeper level. Thank you for that!
hi i just got back from a trip so i will put my two sense inReplyDelete
first off I have a black mother and a Hispanic and white father te and have disabilities
second i love this post
why hatred is hatred i do understand where Ellen is coming from everyone is entitled to their own option
prejudice needs to stop period but for those with disabilities its the worst because people feel that its ok to hurt us because we are broken
I posted about this more on my blog
Ellen, you are kind, eloquent, and have beautiful intentions, as always! Thank you for sharing this post with me! If I were near you, I would hug your neck for the amazing mom and advocate you are! Praying some of these responses do not take any of the wind from your sails. This post was well said and I think you are spot on. Blessings!!!!ReplyDelete
I happen to be one of those people with a disability. Must I remind everyone here that at one time, those previous generations of disabled people also suffered beatings, lynchings, exposure to the elements in order to allow them to die (by embarrassed family members), institutionalization, and even subjected to beggery? So to say our experience doesn't fit many of the same patterns of those who have suffered due to race, ethnicity, sexual orientation, and religious beliefs smacks of narrow thinking, in my humble opinion.ReplyDelete
Celeb disses someone who's different and apologizes what else is new? Frankly i'm all out of forgiveness people like me, Trig and Max have enough challenges without being punchlines in jokes.ReplyDelete
Hello Ellen! Thank you so much for this post. It is beautiful and eloquent. I am sad to see, however, that parents of children who have disabilities would rather rail on issues of over 100 years ago than bond together on the issues that we face as a community today. What will it take for people to see that people with disabilities are part of a minority group. This is about respect, mutual respect.ReplyDelete
When I took classes like Women's and Gender Studies the professor would always teach the idea that rather than creating a hierarchy of oppression, and saying "my is worse than your oppression,"we should be each other's allies. So, for example people with disabilities and racialized people should be mutually supporitive of each other's struggle for equality. I'm saddened to see that's not happening in this comments section. I think the fact that a racialized person would take offense to the analogy used in this posts shows just how deeply entrenched the oppression of disabled people is in our culture. The point of the analogy is NOT that discrimation based on ability and race are the same, but that they are both equally unjust.ReplyDelete
Now, I don't think the analogy is as black and white as Ellen makes it. If we were able to grow human organ artificially, that would be different. But as it stands there is a calculation that has to be made and it's something like this: "How can we create the greatest benefit, and the smallest amount of suffering for as many people as possible?"
You can disagree with criteria used to make these decisions, but traditionl medical ethics dictates that all things being equal the heart would go to the neurotypical patient, because the net benefit to the patient (and unfortunately to society is higher). It's an ethical principle called utilitarian calculus. I'm not saying I fully agree with it, but I think the post would be better if it were it informed by an understanding of how ethical dilemmas are typically resolved in medicine.
And to Suzanne- your comments about people with disabilities and employment come off as astoundingly ignorant. I'm 22 years old, have Cerebral Palsy, and use a powerchair for mobility. I am one term away from completing my Honors B.A. in Psychology with a 4.2 GPA. Over the course of that degree, I designed, carried out, wrote up an research project for my thesis, with no more assistance than any other student.I plan to go on to study law, and work as a criminal litigator.
By your judgement, because I have less mobility than many other people, I am inherently less anle. But, what about the scores of fully able-bodied people who don't have the intellectual capacity to graduate from high school? How do yo decide which of us is less able?
Please remember that people with disabilities are not a monolithic group.