How woeful treatment of a young Kennedy led to Healthy Athletes
Described as the forgotten Kennedy, Rosemary Kennedy, who suffered from an intellectual disability, was subjected to a barbaric lobotomy while she was awake at the age of 23.
The procedure left her disabled, unable to talk or move, and while she was hidden away for years it is her tragedy that inspired what is today the Special Olympic Games’ Healthy Athlete programme.
Decades later, governments are laying down laws to ensure that all people with intellectual disabilities are given the basic right of access to health care.
On Monday, dentist Dr Steven Perlman, founder of the Healthy Athlete programme and global clinical adviser, recalled how one athlete once almost died from a tooth infection and was rushed to the hospital.
“It drives me crazy,” Dr Perlman said. “This shouldn’t be happening. Do you have an idea how much pain he must have been in? An infection like this doesn’t develop overnight. It takes years.”
The athlete had come to the clinic to complain of an ear ache.
“He had been in so much pain for years that it became normal,” said Dr Pelrman.
“He came in with severe swelling in his face and couldn’t even open his mouth. The tooth was so infected that they couldn’t remove it.”
The screening programme also allowed Cote d’Ivoire athlete Yann Beugre, 20, to hear for the first time after providing him with a hearing aid.
“His family could never afford to get him a hearing aid so he couldn’t hear or speak,” said the team’s manager, Doyn Ali, who said she was in tears watching Beugre respond to sound for the first time in his life.
Studies in the UK show the life expectancy of a male with an intellectual disability is 13 years less than those without, while for a woman it is 20 years less.
“But you don’t die of your intellectual disability,” Dr Perlman said. “You die from preventable medical conditions such as heart disease, bowel obstruction diabetes and so on.”
The Special Olympic Games was founded by Eunice Kennedy Shriver, the sister of Rosemary – and of John F Kennedy. To calm Rosemary’s mood swings, her family, ill-advised at the time, agreed to a lobotomy. Her story is one of America’s biggest tragedies.
“After the lobotomy the family hid her away in Wisconsin. She was getting the best healthc are that money could buy, obviously, because she was a Kennedy,” Dr Perlmen said.
At one point, dentists decided that Rosemary should have all of her teeth removed “but they couldn’t do it because her legal guardian, Eunice Kennedy, refused”.
Instead, she searched the country for a dentist skilled at dealing with people with disabilities. They finally found Dr Perlman, who was based in Boston some 2,000 miles away.
“It was sad. She was 63 and I am a paediatric specialist,” he said. “When I finished the case, Mrs Shriver wanted to meet me and thank me so she brought me to Washington DC.
“When she met me she said, ‘I want to thank you, but I also want you to teach me about dental problems for people with intellectual disabilities’.
“I responded, ‘I don’t want to talk about dental problems, I want to talk about the health problems of people with intellectual disabilities’.”
Mrs Shriver said that she thought the government took care of it. She asked Dr Perlmen to help with the problem so he began the Healthy Athletes program.
“We are changing systems,” he said.
But one of the greatest barriers is training healthcare professional such as nurses, dentists, nutritionists and gynaecologists.
The University of Sharjah two years ago introduced a dental programme for people with disabilities but there are fewer than five trained specialised dentists in the UAE, said Dr Shadi Al Khatib, lecturer in dental medicine at the university of Sharjah.
Yet all of the athletes screened this year had dental problems such as cavities, infections and missing teeth.
“The treatment of people with disabilities is difficult and it is very risky to sedate them,” Dr Al Khatib said. “Oral health is the most unmet need of people with disabilities because most of the time they are poor.”
But he said that there had been some progress.
“In the UAE, I am told that people with disabilities are generally not visible in public and this is the reason the UAE wanted this bid for the Games – to change that,” Dr Al Khatib said.
It drives me crazy. This shouldn’t be happening. He had been in so much pain that it had become normal DR STEVEN PERLMAN Dentist, founder of Healthy Athletes