Book Reviews

Curing Intellectually Disabled People

by Ruthie Alekseeva 
11/10/23
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A Vexatious Infirmity

“Waaaa, Waaaa, Waaaa,” Bruno yells.

Rhona places her hands on her hips.

Oh no, not again, she thinks. It’s Mr Freidman. I had hoped he had fallen asleep, but nope, he’s back at it again. Calling out, over and over, the nonsensical word, Waaaa, Waaaa, Waaaa.

Rhona steps toward Bruno’s bedroom.  Glancing through the doorway, she sees that, once again, he has rolled himself onto the crash mat placed beside his lowered bed.

Rhona rubs her fingers over her temples, in a circular motion.

How many times will he do that tonight? she thinks. Every day’s the same. He rolls out of bed, we put him back in. He rolls out of bed, we put him back in and all the while, he never stops that aggravating noise, Waaaa, Waaaa, Waaaa, no matter what nursing interventions we try.

A Gut-Wrenching Story

The frustrations of caring for a person like Mr Freidman can result in us forgetting that people with cognitive issues and communication difficulties still think and feel and have a need for closeness, respect and love. Put simply, people like Mr Freidman are still human beings and we should treat them as such. So, perhaps that’s why Pearl S. Buckman, who won the 1938 Nobel Prize in Literature, for numerous books she authored, published a memoir she called The Child Who Never Grew. This heart-grieving biography 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 calls, “human quality.”

Her book has a mournful tone throughout it and no wonder when the care of her intellectually disabled child, Carol, forced her 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 after she had passed on.

So, 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 this made my heart hurt for the treatment people with cognitive impairments have suffered in the past. My heart ached again when I realised that, no doubt, children with special needs still face many painful circumstances and their parents must still make numerous decisions which must 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.

Making Lives 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, which allows them to experience the feeling of being proud of themselves, and don’t forget to visit your loved ones when you’ve finally placed them. I’m well aware that adults living in assisted-living facilities often don’t receive visitors, but it saddened me knowing that children also receive that kind of treatment.

I pray this book will fall into the hands of all those working with cognitively impaired people because although Pearl wrote this book some time ago now, I think it would inspire them into giving the patients and residents they care for the best care that they’re capable of.  I also hope Pearl’s book will fall into the hands of medical researchers because Pearl ends her book with a heartbreaking 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, 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 in capable 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 your baby ripped away from you must leave a gaping wound in their hearts, and it’s from distress such as this that we should work hard to spare cognitively impaired people from by finding a cure for intellectual disability.