Bernard Carabello: A Hero & A Cry For More Heros

Bernard Carabello is a hero. If you are unfamiliar with Carabello, let me tell you a little bit about his story. Carabello was placed at Willowbrook State School in 1953 at the age of three-years-old. He ultimately stayed there for over 18 years. He has cerebral palsy, and was misdiagnosed by doctors as cognitively disabled. This led to his placement at Willowbrook, a state school for individuals with cognitive disabilities. Carabello was neglected and abused while at Willowbrook. He met Geraldo Rivera in the early 1970s through an ex-Willowbrook physician who wanted to get the truth out to the public about the institution. Carabello snuck off-grounds to meet with Rivera, and was ultimately featured on Rivera’s investigative report about Willowbrook. Following this interview, Carabello was threatened by staff to tell them what he told Rivera, and he was instrumental in the school’s ultimate closure. Carabello has been called the father of the self-advocacy movement. He is a key-note speaker and consultant. I appreciate Carabello for what he did for “our” children, which includes those with Down syndrome. He spoke out and gave those placed at Willowbrook a voice. Thank you, Bernard Carabello. Please watch this great man’s story.


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The unfortunate thing is that I can’t just leave this post on a good positive note, celebrating an inspirational figure. It kills me that I have to now say more. Why can’t Carabello’s work be enough? No, more still needs to be done. To illustrate this sad point, I share a very sad case. No, this did not happen, years and years ago. I am not going to talk about a time from the past or another country. The date starts in 2002 and spans for six years. And this occurred right here in the United States. In 2002 there was a violent incident by a staff, Kevin Miller, at Denton State School for the cognitively disabled in Texas. Miller brutally beat a resident who was placed at Denton. As a result of this assault, Hasbeeb Chishty, suffered extensive injuries and became physically disabled. In addition, Chishty almost died. It took two-and-a-half years before they found out that it was Miller who was responsible. He ultimately confessed. The school, however, spent considerable time maintaining that these injuries were because of a seat belt – consider this, Chishty was found in bed soaking in his own blood and urine. For six months, he was in intensive care with massive internal injuries, and a bruise in the shape of a footprint was found near Chishty's groin. Does this sound even remotely like an incident caused by a seat belt? Furthermore, the family had to leave Chishty in the same institution for six more years until the State of Texas agreed to pay for his care at home. Imagine the fear of leaving your child in a place where he almost died because you had no other options. His family didn’t have the resources they needed to care for him – especially now considering the injuries caused by Miller. Now Chishty is home, but problems continue because the State’s care within the home is considered by the family as inconsistent. Think maybe this is an isolated incident? The Dallas Observer reviewed more than 800 pages of disciplinary records covering 11 state schools in Texas and found that over the last five years there is a continued pattern of abuse and neglect. This is a story from Geraldo Rivera on Chishty’s situation prior to his move home.



Bottom line - we need all the Bernard Carabellos,the Hasbeeb Chishtys, and people who love them to speak up and out. This is just shameful. We can’t close our eyes to how individuals with cognitive disabilities are treated. Denial is not acceptable. I just look into the face of Quinn and I know that this isn’t an option for me anymore. Please do the same.

-Karyn

Update on Willowbrook

I finished the documentary that I was talking about earlier, the film Unforgotten: Twenty-Five Years After Willowbrook. I highly recommend the film for people who are interested in this topic. It follows at least four families of individuals who were placed at Willowbrook during the time of Geraldo Rivera's investigative reporting. It shows what their lives are like now and family members reflect on the experience of having their child, brother, or sister at Willowbrook. One family really stood out. Guess why? I know you are saying, "Um I guess it would have to do with someone having Down syndrome, right?" I know it is shocking that I would be focused on that! Anyway, it was such a powerful story. Patty, the child who was placed at Willowbrook, had sisters who talked about their experience. They mentioned how Patty was such a beautiful baby and how they just loved her. Then came the day that she was placed at Willowbrook. They never really knew why and it wasn't until they saw a photo of a "mongoloid" child in a collection canister on a store counter that they recognized that their sister was similar to this child. That is what they used to call people with Down syndrome and the term still slips out here and there, although it is no longer accepted. They also shared that they road a bus with other families to visit children at Willowbrook, but nobody talked to one another - everything was so disconnected and the support wasn't there. Another powerful comment from the documentary was how when they would walk up to Willowbrook, they always saw a child in the window upstairs looking out calling for mommy or daddy. That just breaks my heart. Remember how I said that stuff like this is still going on today? Why don't you visit the button I have to the left side of the blog? It is for Reece's Rainbow. On the connecting page go to the bottom and click on Russia. Look at the girls with Down syndrome who are in an orphanage in Russia. That could have been Quinn at one time in our own country. I am thankful that I live in this period of time. I am thankful that I feel that I can talk to others and share my experiences with all of you. I am thankful that I don't have the shame. I am thankful that I am learning and growing every day.

But I would be more thankful if all children with Down syndrome throughout the world were accepted and loved in families and homes of their own. I would be more thankful if there wasn't a stigma attached to disabilities. I would be more thankful if the dreaded r-word was gone, vanished into thin air. And I would be more thankful if my daughter had easy access to services, and I didn't have to fight fight fight for stuff (and seem like a five letter word that starts with B and ends with h). But for right now, tonight, I am thankful for what I have. A daughter that doesn't have to see the inside of an institution, who has brothers who love her, is healthy and medically cared for, and who has the safety and security of a home.

-Karyn