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:
Image of paper chain figures via Shutterstock
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Tags: Child denied transplant, CHOP, health | Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max