Many people have shared with me in recent days the tragic news about a girl named Amelia who was refused a spot on a waiting list at the Children’s Hospital of Philadelphia for a kidney transplant because she is “mentally retarded.” When I heard about this, it made my blood boil.
Some have questioned why we in Special Olympics have mounted a campaign to challenge the humiliating use of the word, “retard.” Others have sometimes suggested that Special Olympics has gone beyond its mission in mounting the world’s largest public health campaign to close the disparities and outright bigotry that still infect systems of care delivery for people with intellectual differences. Still others wonder why so many of us speak with such passion about how sport is needed to unleash the power of the human spirit and to attack the vicious discrimination that so often crushes innocent people unjustly.
I say to all of them, open your eyes to the discrimination that goes unchecked all around us and help us stop it now!
If you are a medical professional, raise your voice for dignity now!
If you are a conservative political leader, fight for the dignity of all citizens now!
If you are a liberal political leader, fight for the dignity of all citizens now!
If you are a parent, raise your voice for the dignity of Amelia just as if she were your own now!
If you are a young person, blast the social networks with your commitment to Amelia’s dignity and justice now!
If you are a Special Olympics athlete or family member or coach or volunteer, challenge the status quo and fight for Amelia’s right to play and win the game of life now!
There can be no bystanders at moments like this. Amelia is everyone’s child. If she is denied care, we are all denied our humanity.
This is life and death and that’s not just rhetoric. Please join us in stopping this tragic injustice.
The World of Special Olympics 
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The word ‘retard’ is offensive. The phrases ‘mental retardation’ and ‘mentally retarded’ are descriptive of a medical condition. The young girl Amelia suffers from a disease which will NOT be cured by receiving a kidney (not liver) and will unfortunately most likely not reach adolescence. The decision to not put her on a list for an anonymous donor kidney seems cold, but has a sound medical basis – her expected life span is short and there is a high probability that she would die as a result of the stress of surgery or continuing follow on treatment. More organs are needed than are available and this is the best way we have of making the decision as to who receives donor organs. She may still receive one from a family member or other donor but not from an ‘organ donor bank’. The same decision would be made for a patient at age 87 who needed a kidney. Both decisions are difficult. Both decisions are painful. And both decisions are ethical.
God Bless Amelia! Shame on those who will not put her on the transplant waiting list! My son has Special Needs….should we keep him from getting glasses? Who cares if he can really see…he has developmental delays, Cerebral Palsy. His best friend Michael Lind, has Down Syndrome…should he be denied healthcare just because he is different! Should all the Special Needs kids who go to his school…just stay home? Why do “They” need school…they’re different, handicapp, mentally retarded…whatever YOU CALL THEM…They are someones daughter or son, grandkids, niece or nephew, etc. They are human beings!! Who are always happy, despite their limitations, and have the biggest hearts, they love everyone!
You people need to think…what if it were your daughter or son? What would you do? Just turn away from them to die! I think not, I think you would do everythong possible and them some!
I’m appalled… Give Amelia & her peers all over the United States…LIFE!
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Thank you for recognizing our story. More to come with this. Please follow Mia’s updates: top right on the story page: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/.
My prayers and thoughts continue for you all. As a parent to a child with Down syndrome I want you to know that you now have family all over this country.
Just to clear some things up, she wasn’t asked to be on a list and it is a kidney not liver.
Thanks for the support.
This not right Tim the administrator and the cheif surgeon should both be fired and black balled from working in any hospital and i do mean any hospital again. When the took the Hippocratic oath which is I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.
I will not be ashamed to say “I know not”, nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help. This needs to be taken care of swiftly and fast.
Saw this through IDSC for Life. Really thought-provoking post! I have a little 4 yr old guy with Down syndrome (hes #4 of 5 ). He is an amazing little guy who deserves all the rights, justice and dignity every human being deserves. Thank you for bringjng attention to this and for all you do.
Food for thought… Doctors and genetists pressuring a mother to terminate her baby when she finds out she is pregnant with a poor prenatal diagnosis, is another place that shows lack of respect and dignity for those with disabilities.
Thank you Tim for your your passionate posting. Each person’s life has value. End of story!
There are no words to describe how heartbreaking this situation is to all parents of children with special needs. Who is to say that our children have no or lesser quality of life? My daughter who has Down syndrome is one of the happiest children I know. She enjoys the simple things in life without demanding more. She spreads joy wherever she goes. My heart aches every day that she cannot do the things her peers do, that others ignore or make fun of her, but these problems are mine, not hers. Amelia’s life has value, as do all children’s lives. Sadly, medical doctors are often just as subject to the stereotypes and misinformation about children with special needs as is the general public. Anything we can do to “spread the word” about the value and dignitiy of our children will make the world a better place for everyone. Amelia, and your parents, I will pray for you.
Thank you for calling attention to Amelia’s case, and for illustrating the need to treat each precious person with respect and dignity. The discrimination of those with disabilities starts before they are born. Sadly, as you know, 90%+ of those with Down syndrome who recieve a prenatal diagnosis never make it to birth, due to abortion. I have a four year old daughter with Down syndrome and this statistic is the single most difficult act of discrimination that affects her life today. Knowing that so many would choose her death, rather than her life, is a tough stigma to overcome. But she teaches the world so much! Her life is a contradiction to the advice of the professionals who continue to encourage abortion. Her life is beautiful and we cannot imagine her not being a part of ours! Keep up the great advocacy. I cannot wait until my daughter is old enough to participate in Special Olympics!
Go back a few pages to 41 years ago when, after his birth, my son was diagnosed with Down Syndrome and required life-saving surgery at CHOP. We were given the option of not having that surgery but also presented with the idea that people with DS were usually happy people who brought joy to their families. We, the parents, although in great mental anguish, opted for the right thing and CHOP performed the surgery. This baby grew up to be a man of many talents, both physical and social, who is a fully functional member of a loving family. He has more friends and admirers than any one I know. Some great part of his personal achievements is due to his and our involvement from youth on in Special Olympics trainings and competitions. We are still at it after all these years because it works for our son and the many others whom we coach. So, I do encourage you to get in the game and stay in it. It will be great for your daughter and for you as a family.
My sister (she’s developmentally disabled) was raised in our home until my parents couldn’t take care of her anymore. We put her in group home, which can be good for them, because they are around people that have the same problems as she. She was abused. We would visit her and we found out that they were doing that. Other places love to drug them out so that they can be lazy. Right now she is in a great group home where the owner and the employees genuinely love her and all of their clients. I am so happy that things are well for her, she has a lot of fun. They take them out on outings even “Great America”.
Tim, I am horrified. My daughter has multiple disabilities due to congenital CMV infection. She will soon be 25 years old and now my fear is that some one else will decide what is “right” for her living conditions, despite the fact that we are advised that we have implicit guardianship. I am getting ready to get full guardianship to ensure her safety. When she was born, we were told by the doctors “thank God you live in Fairfax County” and so far we have been very thankful, but I am feeling very uneasy lately about what could happen to her in the future.
Keep up the good work!
Not right
Amen! I have a child with DS and this terrifies me. We need to stand up that All life is precious! I saw your post on the IDSC for Life facebook page & had to say thank you!!
Thanks for promoting dignity Tim. Doctors promoting regular pregnancy screening for conditions such as Down syndrome and then recommending abortions after a positive diagnosis is another area where dignity for the disabled is being betrayed. Visit http://www.savingdowns.com for more information.
Thank you so much for standing up for the dignity and respect for ALL life! We agree with you that ALL politicians need to stop the discrimination against those with disabilities. The current number of professionals pressuring mothers to terminate their pregnancy if they are carrying a child who is diagnosed with Down syndrome is another form of discrimination. The dignity of that child is tragically demeaned when a professional encourages a parent to end a pregnancy, because the child has disabilities. Many of us were pressured, and did not fall for the pressure, and our children are our proof that they were wrong. We stand with you, in that ALL life deserves dignity and respect! One life taken because the child has Down syndrome or any other disability is one life too many! 90-94% diagnoses are being terminated. That is truly heart breaking!
id like to correct you that she was not just denied a spot on the transfer list, but denied the surgery all together. Her own family intended to be the donors and CHOP refused to preform the life saving procedure because they deemed her life too low quality to save. To triage a little girls life is disgustingly inhuman. And yet we preform life saving surgeries on elderly people well into their 80s and 90s, that just doesn’t seem like a well balanced scale to me.
I couldnt believe what I was reading. Denying a child to be put on liver tranport list vecause shes special needs…not “mentally retarded” that just appauls me and angers me!!! Her life is just as important as any other child or adult, and for her being refuused medical help because shes a special needs to person is uncalled for and disgusts me!!! They should feel shame for denying this precious child an option to save her life.
Thank you for your blog. This is a message that needs to be shared wide and far.
I wholeheartedly agree! I would also add that we all fight for the dignity of unborn babies with Down syndrome who are sought out to be aborted by prenatal testing. About NINE out of ten babies with Down syndrome who are diagnosed prenatally are aborted! Many mothers are given inaccurate information and are pressured to abort their babies with Down syndrome. This also goes for babies with more severe trisomies and other conditions that can be diagnosed prenatally. I realize that not all Special Olympics athletes have Down syndrome, but many of them do. These babies are the FUTURE of Special Olympics. Please don’t forget about them! Speak out for the voiceless! Speak out for their dignity!
http://keepinfantswithdownsyndrome.blogspot.com
Thank you, Mr. Shriver, for speaking up for Amelia!
Let’s get the facts straight before we react. She was not denied placement on a transplant list for a liver. She was denied placement on a transplant list for a KIDNEY. She suffers from a genetic condition called Wolf Hirschhorn Syndrome which is associated with severe intellectual deficits and congenital defects associated with the heart. It is linked to a shortened life span. The kidney will not save her life, it will only prolong it. Further, the girl suffers from seizures (another symptom of her condition) and there is an incompatibility between the anti-seizure medications and anti-rejection medications. PLEASE NOTE THAT I AM NOT ADVOCATING FOR EITHER SIDE OF THIS DISCUSSION. I JUST MERELY WANT PEOPLE TO BE ARMED WITH FACTS- KNOWLEDGE TRULY IS POWER.
all surgeries simply prolong someones life. Everyone dies eventually, and really who are we to say that something is nothing worth an extra year of life? As far as the incompatibility, its all chances. There is zero chance this little girl will live past a year without any of this, anything greater then that is better odds. And if you want to talk facts, let me correct you in saying they did not deny her to be on the transplant list they denied her the surgery. Her family intended to be the donors. Our medical world, our government forks over millions of dollars to save many people with low chances of a positive recovery, the main issue here is that she is also labeled mentally handicapped and CHOPS actions scream the outdated message that people who are mentally challenged are not of the same worth of the rest of us.
Shannon: The main issue made on this page only is a false one. This precious child was not denied because of her disability. This is being blown out of proportion.
The girl could also benefit from and live beyond renal failure if she were put on dialysis. As a nurse I am not sure which reality would be more difficult for this child. Dialysis is a 3x a week burden with risk for blood stream infections. Having the transplant this girl would take anti-rejection meds that would leave her immuno-compromised and therefore also at risk for infections (very tricky for someone that is school-aged because as we all know children and schools and daycare facilities are germ sharing playgrounds). I think all the realities of this case are difficult for the family, the healthcare providers and most importantly the child.
I agree. As an educator in our public school system, I agree-knowledge is power; HOWEVER, what is not alright, what will never be alright is to deny life,any life, a short life, a long life, a happy life, a sad life, a difficult life or even a painful life to anyone-for any reason.We all have gifts-even those of us who suffer from seizures.We all have something to offer the world, even those of us who need kidneys or livers-and you know what? Even those of us who have been given weeks to live often live long enough to make the doctors who spoke our death sentence in the face of trials and tribulations look completely incompetent.So you can keep your excuse of wanting to expand our knowledge and understanding of the specifics of Amelia’s situation.Because there is no excuse that anyone can ever offer that will ever be gentle enough or medically backed enough to justify anyone to play God with her fragile, little life.And that is exactly what is happening here.Period.
Kelli, I agree with you whole heartly on so many levels. Every life is precious, every life is worth the effort. Many of us with less abled children have battles with the health service, just for equality. In this day & age we should not have to do this. Some doctors just want to write our children off, at the first sign of an infection. I think that health care needs to come out of the dark ages, and be dragged into the 21st century. Many doctors do descriminate against the less abled children (not all doctors) but children with syndromes are flesh & blood like the rest of us, & they are no less children. They are children not syndromes !
Very well put Kelli…..
So true…we do not have all the facts in this case…pediatric transplant is very complicated and other medical issues also add significantly to the discussion. The way the parents were treated and spoken to remains a problem…empathy has a place in these discussions which is a social worker and nurse responsibility…many times physicians may be experts in their fields but lack in empathy, not an excuse just a reality. The healthcare team in this case messed up in dealing with this family…no excuses!
It is tough to be the parent of a child with a disability and have to deny them the opportunity to do so many “typical” things that others take for granted. I cannot imagine that now we could be forced into the position of explaining to our children with disabilities that they might be allowed to die because certain medical professionals have made the decision that their lives are not worth saving!! How much discrimination and heartache are we as parents of children with disabilities supposed to be able to handle? If God gave life to our children, then they have value! Unless God himself works at this hospital, noone there has the right to decide that our childrens’ lives are no longer worth living. God blessed these physicians and surgeons with the talent and skill to save lives. He does not give them the authority to decide whose lives are worth saving and whose are not. To those physicians, surgeons and hospital administrators- take this little test. If this were your child, would you do the operation to save her life? Be honest!
We too have been told that ‘due to your son’s genetic condition, he is not eligible for a heart transplant.’ These words cut deeper than any of the ‘he won’t’, ‘he can’t’, and the ‘he never wills’ ever could. What make our son a lesser human being? What makes him not worthy to have a chance at a long life? PLEASE share Mr. Shriver’s post.
Thank you so much Tim for your support of #TeamAmelia! Your family’s tireless work to end the discrimination of individuals with cognitive impairments is legendary and awe-inspiring. We are proud to have you on our team!
Thank you Tim, for everything that you and your family has done for those with Special Needs – for so many years. We have a 24 year old daughter with Down Syndrome, who has received outstanding care from the doctors and staff at CHOP in Detroit and in Philadelphia. I can’t say enough good things about them. I am having serious problems, however, with the ethical, medical and legal ramifications of their decision regarding this family – or any family with a Special Needs child. If the good people at CHOP in Philadelphia allow this discriminatory decision to stand, we will never go back.
Doug in New Jersey
This is unjust no one should b denyd medical help no matter the physical or mental limits of a human being. Plz every one speak up for those who r unable. My sis has autisum, i love her dearly, plz let the world now this isnot right.
Tim….who and how do we contact the Philadelpia Childens Hospital to let our voices be heard?
Pam….Hope this begins ur quest..The Childrens Hospital of Philadelphia. 3400 Civic Center Blvd # 439 Philadelphia, PA 19104-5127
(215) 590-1000…Good Luck!
Angela
You can also sign Amelia’s petition here:
http://www.change.org/petitions/director-of-public-relations-allow-the-kidney-transplant-amelia-rivera-needs-to-survive
I am right behind you on this one!!!
I to have a daughter with Down Syndrome. She was denied many years ago by a facility & anesthesiologist. This was for putting tubes in her ears. She had already had the procedure done once there. It infuriated me! How could the deny her, because of having Down Syndrome, because of maybe her airway was a little smaller than most, because of an ASD heart defect. She had been cleared by her doctors. When the facility & agreed anesthiologist agreed to to the procedure, I told them “NO”, that I will go to a facility and pay out-of-network insurance, because I did not feel like they were qualified to rake care of my little girl. If they felt that uncomfortable, then I sure did. Her ENT was appalled. And he stood behind me.
Wow Anna, so hard to believe. Glad you went somewhere else. Your daughter is lucky to have you as her mom.
Good for you Anna! Clearly that facility and anesthesiologist were incompetent. Thank goodness you took your daughter somewhere else. Hope your both doing well… 🙂
I also know first hand Anna, how ignorant and uneducated some medical professionals can be, and I’m a nurse. I have a 48 year old (soon to be 49 yo) brother with DS. My mother fought for his rights until she died at 87, now I fight for him! And it never ends!! When he was born the physician told my parents to put him in an institution and forget you had him. He won’t live past the age of 5 maybe 7. When my brother at 35 and my cousin at 40 (who also had DS – he’s gone now) finally had their ASD repairs, the physicians who cared for them couldn’t believe that our family didn’t have their surgery done when they were babies. Then they were outraged when we told them that back then, they wouldn’t perform the surgery on them. They had their ASD repairs done at St. Mary MC in Langhorne, PA and Lankanau Hospital, Phila.
Funny, how years later when the physician who told my parents to put my brother away was old and sick, I was his nurse. I told him, with no resentment or anger, who I was and how well my brother was doing. What if I had felt the same way about him: he’s old, no quality of life left, let’s just put him out to pasture. Everyone has the right to a better quality of life. I can’t believe this is still going on!! This must stop NOW!!! I have signed the petition for CHOP and encourage everyone else to do the same. I will continue to fight for my brother and others, long after he is gone.
My second son has been fighting against the word and other similar ones- he has two brothers diagnosed with autism, one being assessed and himself is being assessed for ADD. the teachers are onside but he has been hit, punched and even bitten by the other kids for challenging them. What do I do- I am so proud of him for fighting the fight- but he needs to be safe. He is ten, for Heaven’s sake. It is so wrong but I am so very proud of him.
I would enroll him mixmarcial arts its will teach him self respect to controll ur self in many different ways n most of all toprotect him self, they also tell them its only for self defeance. Its an all around good expearence. U can sit in on the class as well u can even ask the instrictor to only show him certin moves. I understand wat u r going through my lil sis has autisum she used to get pickd on all the time but not any more.
Tim, please tell us what we can do. Who do we contact? How do we raise the roof? Not surprised Amelie was treated as dispensable in a hospital. My brother was called retard more than once by nurses, a doctor told me maybe we should “just provide palliative care” rather than treat his pneumonia, and a doctor put in my brother’s medical records he was “demented and in a wheelchair” when he was neither. Oh and that’s with the knowledge my brother had a very activist guardian (me). I constantly worried about those individuals who had no one close by to fight for their rights.
we need to stop useing the word i bein celled it in school
Tim– this is appalling. I am sick to my stomach. I am scared for our precious son who has Down syndrome. I am scared for Amelia and her family. I’ve posted this on our blog and also on Facebook. Thank you for all you do for the world of Special Olympics. I am devoted to helping end the use of the R word and to preserving dignity for all!!!