Impact of selective eugenics on the disability community

 

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In 1954, I came into the world with a disability, later to be officially diagnosed as spastic diplegic cerebral palsy. Twelve years of 4 times daily therapy followed. To say life was challenging is an understatement. Aging has tested my daily living in ways that will never be experienced by those who have no such impediment to freedom of movement, but I press on. I have to. Though many would say I do have a choice, in the grand scheme, any choice I have would mean giving up my autonomy, bit by bit. That will never do. 

Historically, disability was viewed as a moral problem, often bringing disgrace to families who had a disabled loved one. When I was in university many moons ago, I had a conversation with Dad about Mom ‘over-exercising’ me as a child. Now I have to ask myself – ‘was she?’ Were it not for that intensive daily therapy, I’d probably not be walking today, at 69 years of age. I’ve had conversations over the years with therapists who say some parents aren’t hands on enough and they, the therapist, can tell when a child’s not been regularly ‘physioed’ at home as per instructions.

Dating to my years in university, I’ve been keeping up, if only in a limited way, with the literature related to eugenics and persons with disability and other such ‘undesirables’. As the show tune goes, ‘there’s a place for us!’ We, as a society, have to decide that regardless of the deficits to physicality, intellect and emotionality, all have a right to a life well lived, as well as they can live it.

Those who can really have a moral duty to support and lift up those who need guidance to be safe and happy. Playing that role ensures balance across the board, with a sharing of the ‘community load’ to make everything run along smoothly. A win-win.

It would require volumes to discuss why persons with disability have been treated so inhumanely through the centuries. Based on my own understanding as a person so designated, we were thought to be instruments of the Devil, to be feared, to be starved, whipped, abused in unimaginable ways. Scary times.  Plato and Aristotle sanctioned infanticide for eugenic and economic reasons, believing that infants with disabilities would burden the system’s resources,” writes Irmo Marini referencing work by Hugh G. Gallagher.

Many were subjected to various forms of abuse right up until the end of World War II!

It pains me to know that in various parts of the world atrocities towards persons with disability continue to this day despite the 1991 UN adoption of Principles for the Protection of Persons with Mental Illness. Prisons and streets across the globe are filled with the disenfranchised challenged by a range of insults to health and wellness. Genocide will never be the answer. One way of controlling undesirable population growth, which is still practice today to an extent, was through sterilization, abortion or other forms of ‘family planning’.

With advancements in medical science with regard to reproductive health and procreation, families can plan what type of traits they want in a child. Should undesirable traits appear, in a prenatal screening, as example, the option to terminate exists. Eliminating human characteristics seen as undesirable in the unborn effectively diminishes those among us who are already here; we’re seen as burdens in some situations, which could set the stage for new eugenics practices. That would be untenable, quite frankly and the very thought puts fear and loathing into the hearts and minds of the disability community across the globe. To undermine social acceptance and solidarity must never happen. We’ve come too far.

Don’t get me started on the rise in the promotion of assisted dying. What goes on behind closed doors with persons with disability who are still able to minimally care for themselves and are of sound mind but are supported by daily caregiver? Caregiver fatigue may inspire certain conversations that should never take place unless a third person is present to act as advocate for the person with life challenges.  The perception is that it’s better to be dead than alive with disability, and to disturb the mental health of those who struggle with the notion that they don’t deserve to live is a crime in itself.

If we see people struggling, we must speak up. A ‘death of convenience’ is never the solution. Counselling for all involved in the struggle to cope is available. Advocating for caregivers and those for whom they provide care is vital to community health. Compassion in action.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at  Carla MacInnis Rockwell