The Un-Hidden Bias Against People With Special Needs

Last week, a mother of a child with cognitive impairment was told her little girl couldn’t get a kidney transplant because she is, in the doctor’s words, “mentally retarded.”

The mother couldn’t believe what she was hearing. As a parent of a kid with special needs, neither could I. Her child, Amelia, has Wolf-Hirschhorn Syndrome and kidney failure; she has been getting treatment at the world-renowned Children’s Hospital of Philadelphia. And there sat the doctor, telling the mom and dad that he was going to advise against letting Amelia get a kidney transplant, which she will need in the near future. Even if the parents or someone in the family were donors.

The mother said, “So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is mentally retarded?!”

And the doctor said, “Yes. This is hard for me, you know.” And then, a minute later, “I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”

Although the social worker present at the discussion noted other concerns about Amelia getting a kidney transplant—needing another one in a dozen years, concerns about her staying on top of medication—this doctor only mentions “mental retardation” as the reason why Amelia shouldn’t get a transplant.

 

There’s a petition up on change.org urging CHOP to let this child get a transplant. One recent commenter notes, “I am Amelia’s teacher. I have seen how far she has come this past year… Mia has been progressing very well developmentally… She is a little girl that makes me proud each and every day… I thought we have come further for people with disabilities, but it looks like we have a long way to go.”

Denying a child with cognitive impairment an organ transplant is an extreme example of prejudice against people with disabilities, but sadly, the bias is ever-present. There is no lack of fodder on the Facebook group Special Needs Watch: Hall of Shame; last week, its posts included a site with quizzes like “How Retarded Are You?” and Bill Mahrer’s comment that Mitt Romney has pursued the presidency “like an autistic rottweiler.”

People such as the above doctor are blatantly horrific because it’s clear they believe that people with disabilities are less worthy human beings than others. Yet those who toss around the word “retard” or make demeaning jokes about disabilities also do harm to kids and adults with cognitive impairment. These words perpetuate the perception that people with cognitive disabilities are inferior. That kind of thinking is ancient history: In the 1500s, people with cognitive impairment were kept in prisons. In the 1800s, one hospital with a section for adults with cognitive impairments supposedly let people pay to gawk at them.

Derogatory terms like “retarded” and other slurs keep alive the perception that adults and kids with special needs don’t deserve to be treated like other people.

What to do? For one, you can sign the petition to help Amelia. But you can also speak up when people use the word “retard” or otherwise disparage kids or adults with cognitive disabilities. Because until the world starts thinking of kids and adults with special needs as equals in society, kids like Amelia will continue to be viewed as less valid human beings—and even less deserving of life.

Update: On Monday, January 16, Chrissy told USA Today that she and her husband had been invited back to CHOP to talk about a transplant.

From my other blog:

If you ask people not to use the word “retard” 

 

Image of paper chain figures via Shutterstock

 

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  1. by Cassandra

    On January 17, 2012 at 1:25 pm

    In other words, the Doctor thinks because she is disabled, she should just die. I really hope the parents get a second opinion and go to another Doctor or Hospital, this is not right. Every person deserves to live, and a chance at life, no matter their condition. Living with someone with special needs, Doctors said she’d never talk or walk when she was young. She is now almost an adult and walking, and talks more than ever now, and does amazing things on the computer! Never listen to others words, never give up hope, trust your instincts! Get a second opinion. Amelia, you’re in my prayers!

  2. by Jen

    On January 17, 2012 at 1:34 pm

    As a parent of a child with disabilities, this made me tear up. How incredibly sad. I just can’t imagine denying this to someone because they are disabled. Definitely get a second opinion on this one. My prayers are with the little girl & her family.

  3. by Mary P

    On January 17, 2012 at 1:42 pm

    Posted on Facebook, but sharing here, maybe the writer will read it.

    Shame on Parents.com in the blog for leaving out what else WHS entails. Putting another healthy family member at risk for a major surgery is forefront. Her disease isn’t just about her mental capacity. A doctor would NOT put a healthy patient at risk for someone with the effects this syndrome has! I think the mom is playing this mental card like a race card. All we have is a “Mom said… He said”.

    From an actual story “Wolf-Hirschhorn Syndrome, which results in developmental delays and can also include heart and vision problems, among other symptoms” – if there are heart problems, of COURSE there will be denial. She isn’t just “mentally retarded”. There are many other parts of her body that are in jeopardy.

    “Brain and muscles – profound mental retardation, small head, seizures (50% of individuals), low muscle tone, poor muscle development
    Bones – very short stature, facial deformities, malformations of hands and feet, chest, and spine
    Heart defects
    Urinary and genitals – malformations or underdevelopment of organs .”

    Also interesting to note, so far, the mother has nothing on file to allow anyone to discuss this conversation or anything related to her child. HIPAA laws bind the doctors and institutions regarding this, adding even more murky waters to “He said she said”. Because all we can hear is what SHE says he said!

  4. by Alicia

    On January 17, 2012 at 1:55 pm

    my husband is a kidney transplant patient, I would like to be tested to see if I am a match for this angel, if I am I would like to donate one of my kidneys to her. please email me with info about what I would need to do in order to help this little girl.

  5. by Sue

    On January 17, 2012 at 2:56 pm

    Mary P~ What does that have anything to do with his comment? The mother is basically saying that the doctor said that she shouldn’t have a transplant, because she is not worth saving. That in itself is disturbing. There are still doctors out there that feel that special needs people are not worth the time of day. You must be one of them.

    I wish the best for this little girl. ♥

  6. by Karen R

    On January 17, 2012 at 3:06 pm

    To Mary P:
    By your judgment my daughter would not be eligible for a transplant either. She has CHARGE syndrome. She also has hey congenital heart defect and will be under the care of a cardiologist her entire life. You can see what CHARGE involves on chargesyndrome.org . My daughter is also developmentally delayed and has autism. I would expect any hospital to offer her a transplant if she needed one.

  7. by Mary P

    On January 17, 2012 at 3:35 pm

    Sue – It has everything to do with it. Because the mother won’t tell us anything, refuses to sign a waiver for the hospital to do so, then we must assume the daughter has heart problems which may NOT survive the surgery in the first place. It’s a “mother said, mother said” but nothing from the doctor. Even in the mother’s own words, she states “I know all about it, I’ve done my research” then doesn’t know what he’s talking about with her anti-rejection treatment. This condition is dangerous in the first place (given the statistics on child mortality), the transplant would need repeated often in the first place, with increasing likelihood of failures with each at the risk of a healthy human being, each and every time.

    Karen – what I say may not be popular but if your daughter’s organs were all failing, her prognosis is grim in the first place and the medications could kill off brain cells deteriorating her life even further, can you tell me you’d risk a healthy family member’s life to save her? I could never ask anyone to risk their life for that. Your daughters autism and delay have nothing to do with it. If her heart is failing, or the other organs are failing, can you honestly say you’d ask another person to risk dying at the chance of that one organ working for a little bit while the rest fail? I’m a mother to 4 boys, my twins turn 1 today. They had TTTS. I had a ton of risks with the fetal surgery and difficult choices may have had to be made. I’m very lucky and thankful, but I certainly cannot ever dream of asking another person to defy the medical community, defy common sense and put their life at risk to end up not mattering in the end because of all the other problems they would have had. I couldn’t even have done that choice because it’s not fair to my other children, that if one were to be in such rough shape, I risk my life and die, the child still will not have made it and left the others behind.

    This isn’t just a transplant from one healthy person into an otherwise healthy person with need of an organ. Transplants aren’t just “here, have an organ, see ya in a couple years for another” either. It’s a lifetime of meds that depending on how it went, could make any other issues with the disease go into overdrive. In rare cases, it can kill the heart off in patients with compromised hearts.

  8. by Sue

    On January 17, 2012 at 3:48 pm

    Karen R~ Thank you for sharing about your daughter. I have just bookmarked chargesyndrome’s website so I can read up on it. My son was diagnosed with Autism last year and is now in 2nd year preschool and doing well. He, thank God, has a great doctor who has an interest in Autism and other disorders etc. :)

  9. by Jennifer J in MN

    On January 17, 2012 at 4:03 pm

    Mary,

    From my little research, WHS can be on a spectrum. Not everyone afflicted with WHS has the same problems. It sounds like this little girls is developmentally delayed, but we don’t know what other problems she may have. The fact that the doctor only mentions “MR” and not any other physical problems is indicative of what this article is about. Do a bit of research and you’ll find that many hospitals do us ‘MR’ as a reason to deny transplants.

  10. by Heather Morgan Shott

    On January 17, 2012 at 8:58 pm

    This is horribly unjust. I just signed the petition, Ellen. Please keep us updated on what happens.

  11. by sabrina bundakji

    On January 18, 2012 at 1:07 pm

    What happened to equality in America? Very disappointed that a doctor whom should be very well educated is so ignorant. Such a pity. Just curious, does this mean that of all the many ppl having adhd and on meds for it should not be allowed to live if needing surgery? Oh, what about us mothers who give birth and have our blues/depression, hmm, should we die as well? Better yet, how about doctors who are mentally challenged in acknowledging a human being when seeing one? An absolute disgrace.

  12. by karen hoffman

    On January 18, 2012 at 2:21 pm

    every child should have equal rights!

  13. by @sumpepandwong

    On January 18, 2012 at 6:09 pm

    Thank you for your post. Amelia’s story is heartbreaking. I think one aspect of her story that isn’t discussed is the idea that peds medical professionals should and often times do work in concert with families. This particular situation seems to lack this “team” approach and is very disturbing to me.

    As a parent of a daughter who lives with half a heart and is special needs (beyond that of her heart defect) I have had the experience in participating in the care of my child. Medical professionals are “clinical” and look at the world in a detached way…ethics people in particular. However, parents as part of the “team” play an important part in the decision and intervention process of their child. As a heart mom, I am hard wired to be laser focused on her LIFE and keeping her ALIVE no matter what. An ethics doctor or administrator may look at the macro level of the clinical experience of providing life-saving care for special needs children and issues of quality of life (whatever that means). But it is precisely why parents need to play a critical role in advocating for life especially in instances of transplant that pushes medicine and humanity to be at it’s best. If you look at the history of pediatric heart surgery, the majority of medical professionals advocated for end-of-life and only a few “rebels” that conducted experimental BT shunt surgery to extend the life of children born blue with heart defects. But the critical team member is the parent and their willingness to hand over their “blue babies” in hopes of extending the life of their child even for another day that helped push medicine to a whole new direction…for the better.

    The pursuit of LIFE is at the core of our humanity. We are at our best in this journey. And for some people who think that Amelia’s will to live maybe “questionable.” I would argue that her smile says otherwise. Her parents are right to protest this decision. They are Amelia’s best advocates and I hope CHOP will reverse their decision knowing that it was not only WRONG to discriminate based on MR (lame term) but because working in concert with parents advocating for life is the RIGHT thing to do for the patient. This is a lesson taught to me from the best part of our medical history.

  14. by Elizabeth Walker

    On July 11, 2012 at 11:32 pm

    to Jennifer J in MN who posted January 17, 2012 at 4:03 pm:

    It’s VERY obvious that you did very little research on this before typing your response to Mary. amelia is SEVERELY disabled. There’s videos of her sitting in her parents’ laps and she is basically a turnip. She barely breathes without help from machines and has to have 24 hour a day care so she’ not just a bit “delayed”. She’s had numeous previous surgeries for things like heart failure, liver failure, lung failure, blood diseases, stomach diseases and much, much more. Her body is not proportioned right to even properly receive an adult transplant. It is possible for an adult to donate to a normal-bodied child but she’s so twisted and deformed that it’s most likely going to restrict function of an adult organ. So if her parents organs won’t fit or stop working after surgery do they steal one from her brothers? Do they steal one from a kid who’s been on the transplant list for years and has no other issue except kidney failure by bumping amelia to the top of the list because she’s the most critical even though she the worst candidate?

    The doctors have a guideline set by COTA or NTF (national transplant organizations) and they MUST follow this guideline. One of the things that make you ineligible is MR. The doctor didn’t come in and go hey your kids a turnip and not worth saving, he was going by the rules given to every hospital.

    What Mary was refering to is that amelia’s mother went on the news and the internet claiming that a surgeon denied her ONLY because she’s retarded then she refused to sign a HIPPA release for the surgeon to discuss the specifics of amelias medical case and tell the world WHY she was denied. amelias mom even admits in her blog that everything went “fuzzy” and she was “confused” but then claims to have perfect recall of everything said in the room then refuses to let the doctor and CHOP defend themselves and their decision. If you don’t see anything wrong with that then you need to look again.