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Let's Find A Cure For Intellectual Disabilities

by Ruthie Alekseeva  
12/25/2023 / Book Reviews

Help Me Find My Talents

“Number three, cup of tea,” an amplified voice at the front of the room crackles.

The voice pauses, then repeats itself.

“Number three, cup of tea.”

Emily prods Matty’s arm with her finger.

“Hey, Matty,” she whispers. “Pay attention, will you? You have a number three.”

“What?” Matty says, shaking himself out of his reverie.

Emily crosses her eyebrows.

“Number three. You have a number three.”

Matty stares at his Bingo card.

“Oh, yeah,” he says as he picks up a red token, placing it on his card, covering up the number three.

“Forty-one, time for fun,” the microphoned voice at the front of the room continues before pausing and repeating itself.

I’ll say, Matty thinks. I desperately would love some fun, but I don’t think it will happen today. I find Bingo boring.”

Matty looks at his Bingo card.

Nope, he thinks. I don’t have a forty-one.

He glances at Emily. He notes that while she leans forward, her arm outstretched, her hand hovering over her pile of red tokens, he slumps in his chair.

“Sixty-six, clickety click,” the crackling voice at the front of the room says.

Emily scans her card, her pupils the size of headlights.

Emily whoops, then slaps  the sixty-six on her Bingo card with a red token.

“Yes,” she shouts. “I won. I won. That’s three times today.”

Matty smiles, then says, “Well done, Emily. You’re the best Bingo player I know.”

“Thanks, Matty,” Emily says, “but you look blue. What’s wrong?”

Matty sighs.

“Bingo’s okay for rainy days, I guess, but it’s not really my thing.”

Emily frowns. “Really? I love boardgames. What would you rather do today?”

Matty sits straight, beaming.

 “I love dancing and acting, and one day, I hope I will direct a movie.”

Listen To My Story

And that’s exactly what Tommy Jessop, a man living with Down Syndrome, has spent much of his life pursuing - acting, dancing and co-directing movies. Born an entertainer, he became the first actor with Down Syndrome to star in a primetime BBC television show and to perform in a theatre production of Shakespear’s Hamlet, but the lives of people living with intellectual disabilities haven’t always gleamed with such glamour. Perhaps, that’s why Pearl S. Buckman, winner of the 1938 Nobel Prize in Literature, felt compelled to publish a memoir which she called The Child Who Never Grew. This heart-grieving autobiography recounts her experiences of raising an intellectually disabled child during a time when the care offered such children often staggered miles short of a term she called, “human quality.”

Her book has a mournful tone throughout it, and no wonder when after caring for her intellectually disabled child, Carol, at home for some years, she felt forced into making such guilt-inducing decisions as determining that placing her daughter in a hostel for special-needs children, instead of nurturing her at home, must eventuate. Pearl made this decision with great reluctance but realised that at some point she would die and, as she had few reliable friends or family members, she couldn’t hope that someone else would take on the reigns of protecting her daughter and providing her with a family-like dwelling place in their own home after she had passed on. Thus began Pearl’s search for an assisted-living facility worthy of Carol’s significance, but what she found, time and again, left her feeling deeply anguished and discouraged, especially on an occasion where she visited an institution where the children ate their food off the floor like dogs and had their cement-floored rooms hosed off a few times every day because no one had taught those children the basic skill of toileting themselves. Pearl also visited facilities that had buildings and gardens of supreme grandeur but found that the staff working their lacked affection, viewing their task of caring for the children living at their lodge as only a money-earning enterprise and displaying little enthusiasm for ensuring the hospice had a merry ambience and stimulating activities for keeping the children’s minds and imaginations active.

Hearing stories such as these made my heart hurt for the treatment people with intellectual impairments have suffered in the past. My heart ached again when I realised that children with special needs, no doubt, still endure many less-than-an-ideal conditions and that their parents must still make numerous decisions which leave them feeling off balance and guilty. Parents of these children must often wonder if they’ve made the right choice or if a different strategy would have worked better, and sometimes it’s not only parents who experience such conflicting emotions because sometimes elderly parents lose their cognition and their children must then place them in aged-care rest homes, and not all children feel comfortable with that.

Help Make My Life Better

Pearl Buckman must understand this better than most people because, realising that others must follow in her footsteps, she devotes a whole chapter of her memoir to outlining what she believes guardians in her situation should look for when placing their loved ones into professional care. One tip she gives is that she thinks guardians must prioritise quality of care over the expense of providing quality care. Every dime spent on people with intellectual disabilities is well worth it, she believes. Pearl also believes that guardians must focus their attention on the managers of the hostel because often the way the manager acts, sets the bar for how the staff believe they may behave as well. Look for fresh air, natural lighting, a cheerful décor and clean clothing and bedding, she says. Question if the facility provides activities that give the participants a sense of purpose and a taste of achievement - activities which allow them to experience the feeling of being proud of themselves - and, above all, don’t forget to visit your loved ones once you’ve finally placed them. I’m aware that adults living in assisted-living facilities often don’t receive visits from their families, but it saddened me no end when I learned that children have also receive that kind of treatment. Pearl says, when that happens, the children who do not get visits from their families feel unloved and wonder why other children receive visits but they do not. It’s my opinion, that no child or adult with or without a learning disability should ever feel that way.

It's not only Pearl Buckman who has seen the need for informing health care workers on how they can make the lives of people with intellectual disabilities more hospitable. Tommy Jessop, one of the first professional actors with Down Syndrome, has also written a memoir. In his book, he reminds doctors and nurses that not all people with Down Syndrome or any other intellectual disability are the same. Some seek attention. Some prefer living on the periphery. Some like music. Some like swimming. Some dream about acting on stage. Others dream about modelling designer Gucci gowns or having their paintings displayed in art galleries. Whatever their giftings are, Tommy says, instead of saying, “you can’t,” health care workers must help people with intellectual disabilities find places where they can use their talents, so they can feel proud of themselves and feel as though they’re also contributing to making the lives of other people better.

Tommy also asks health professionals to believe in people with intellectual disabilities and to value their lives because not everyone does. That’s heart-breaking, and it must change. Listen to them, he says, and treat them fairly, equally and with respect. Allow them to choose who they live with and help them find accommodation close to the homes of their family and friends so taxi fares don’t become too expensive. Another important way health professionals can show people with intellectual disabilities hospitality is to remember that people with Down syndrome die from preventable diseases at twice the rate that people without an intellectual disability do. It’s believed this is because sometimes doctors and nurses attribute all the health problems of intellectually disabled people to their syndrome and then deadly diagnoses get missed. This can also happen at school with teachers attributing all their learning difficulties to their intellectual impairment, so Tommy believes we should educate schools and hospitals about this phenomenon and invest in training up Learning Disability Nurses. Tommy believes the creation of such a role would help doctors communicate better with people who have syndromes, so they can provide better care and hospitality.

Help Me Find A Cure

I pray the book, The Child Who Never Grew, and Tommy Jessop’s book, A Life Worth Living, will fall into the hands of all those working with intellectually impaired people because I think these books would inspire health care workers into giving the patients and residents they care for the best care that they’re capable of.  I also hope Pearl Buckman’s book will fall into the hands of medical researchers because Pearl ends her book with a heart-wrenching plea that they please find a cure for the condition we call intellectual disability because although many intellectually disabled people live amazing lives, finding ways of not missing out on anything in life, the fact is that they still do miss out on some things.

The movie, I Am Sam, depicts the life of an intellectually disabled man whose girlfriend becomes pregnant. This woman abandons him, leaving him with the baby. Life goes well for a while until social workers remove the baby from him, believing him incapable of raising the child on his own because of his intellectual disability. Eventually, Sam re-gains custody of his child again, but in real life, that doesn’t always happen. Having their babies ripped away from them must leave a gaping wound in their hearts, and it’s from distress such as this that we should work hard to spare intellectually impaired people from, so perhaps the most complete and permanent way we can provide people with intellectual disabilities with the care and hospitality they need is simply by once and for all finding a cure for their intellectual disabilities.

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