Impact of selective eugenics on the disability community

 

Photo: Unsplash

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

Meals on Wheels is vital to community

Photo Submitted: Meals on Wheels

As I was developing this piece about Meals on Wheels and their significant contribution to the communities they serve, it occurs to me that I, too, benefit from meals on wheels -- delivered to my desk while I write or my lounge chair while I binge on a favourite BritDram. My wheels take the form of a wheeled walker that I began using when it became clear it wasn’t safe for me to carry plates of food with one hand while balancing my walking with the other, touching furniture and the like. The meals are home made, from scratch. If you see yourself in that image, consider your own wheels for meals for in-home use. You won’t be disappointed. I only wish the model I got was available in red.

Meals on Wheels Fredericton, in operation since 1967, would struggle to meet the needs in the community where many people depend on their assistance with daily meals were it not for the volunteering spirit of people who have time to give. As with many other volunteer agencies, they’re always looking for ‘new blood’. If you feel you’d like to be part of their team, give them a call at 506-458-9482.

Even where I live, serviced by Upper Nashwaak Community Outreach, Meals on Wheels volunteers are always being sought after.  If interested, call 506-367-7735 for information.

More volunteers are needed across the board, with all service agencies, from those catering to the needs of infants and children right on through to community services for the elderly and infirm. Delivering meals is one such service that contributes to the health and wellness of those who don’t easily get out and about to participate in the community. What must never be forgotten is that they are still part of the community. The volunteers who devote time and attention to meeting these needs are often seen as unsung heroes. You’ll never hear them singing their own praises. That’s not why they do what they do. 

Ranks of volunteers with Meals on Wheels and other agencies of volunteer service routinely ‘top up’ to ensure they have enough bodies to get the jobs done. Many have been with them for decades and among that number quite a few volunteer with other services agencies. Imagine what our communities would be like without them? So, to Lynne and Marc Aube and all the rest of the teams out there  -- “you are appreciated, you matter and we see you. Thank you.”

                                                   

To know that meals are prepared at the well equipped facilities at the Dr. Everett Chalmers Hospital and the Meals On Wheels kitchen ensures that accommodation is made for a range of dietary restrictions, reassuring to family members of those who are recipients of the meals. As well, it’s heartening to know that those nutritious meals are delivered by caring people who do much more than deliver food; they’re a social connection, mindful of the atmosphere of the homes they visit, and if something doesn’t seem right, doesn’t feel right, volunteers will do the ‘good citizen’ thing and connect with someone who can visit the home to assess needs.

As this little old lady senior educated herself about the services available via Meals on Wheels, I learned about The Wheels to Meals Senior Dine-out luncheon program, in operation since 2000. Though the program has been on pause throughout the pandemic, relaunch is anticipated in the Fall.  Every Tuesday from September to May, approximately 50 seniors dine and engage in conversation,  with entertainment provided by local volunteer groups. The dedicated volunteers who provide transportation to and from such events are doing more than they perhaps realize. Boosting the number of volunteers strengthens the program so that no one who needs a hand up gets left out. Proper nutrition provided by Meals On Wheels also dials back episodes of dementia. When frail seniors eat in isolation, they often don’t eat enough, drink enough water, etc. A real live person with whom to engage is just as important as the food on the plate.

These opportunities for social connection contribute to the physical and emotional health of all who avail themselves of the services, whether client or volunteer. Volunteering gives purpose to daily life of those who have left a decades long ‘dressed for success’ worklife to join groups to fill their retirement days in a meaningful way while meeting with people who are challenged by issues that limit their full inclusion in community life. Aging and declining health impact the body and soul in ways that significantly contribute to people ‘working themselves into a state’ out of frustration and loneliness.

 

I learned decades ago, in a conversation with my father, who ‘doctored’ in Carleton County communities out of the then Northern Carleton Hospital, that a certain percentage of his admitted patients were hospitalized to treat social isolation. A day or two in the hospital was often sufficient for the person to reset him/herself emotionally, return home and carry on until the next wave of fear and anxiety overtook them. Physicians would do well to pay attention to what they’re not hearing during consults/assessments. They’re often key players in recommending that patients be assessed for programs such as Meals on Wheels or Extra Mural Program. Ultimately, it’s a collaborative effort and one that is important for every community where seniors are striving diligently to ‘age in place’. 

Bon appétit!

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

The housing insecure need uplifting

 

Photo: Unsplash

Housing insecurity is not a new thing that’s going away anytime soon. Certain segments of the population by virtue of a life lived on the fringes will always be insecure given limited income reduces their opportunities to have the home of their dreams. For them, it’s a juggling act. One dropped ball could throw their whole existence into panic.

Thankfully, we do have systems in place that offer supports for those needing a hand up. Subsidized housing is one such mechanism but it does have drawbacks, if one can call them that.  As example, a single mother and her minor child live in a 2 bedroom apartment and she receives a sum based on the number of persons in the home. She and her child have lived in the same place for years, receiving a monthly benefit, often financial assistance through Health and Community Services. Once the child ‘ages out’ of the system of government support, Mom may have to move and with that is a reduction in her monthly income. Costs associated with moving may be prohibitive. Then what?  And where will she go?

The term ‘welfare’ conjures up all manner of negative connotations which is unfortunate because no one wants to ‘live on welfare’ as a life goal. It’s demeaning and it’s demoralizing; a punch to the gut especially when the individual may have a health challenge, whether physical, mental or emotional and is not and never will be able to contribute to the labour market in any sustained way. They can, however, contribute in other ways, if given opportunity. 

Those of us who can have a duty to be unbegrudgingly uplifting to those who struggle making dollars stretch to cover housing, food, other household maintenance amenities. There’s little left for discretionary spending and when there’s belt tightening, a single mother will most always meet the needs of her child before her own.

It is not our job to police how those of lesser means spend their money, regardless of where it comes from. In today’s world, television and computer, no longer considered luxury items, are a vital part of education and employment advancement; a significant part of daily life for the majority of us. An internet connected computer is often the way out of a challenging situation, like minimum wage employment that is no longer meeting the financial costs associated with living. 

What all of us can do is advocate for more enriching training programs that are relevant to the times in which we live and will hold the interest of students undertaking to educate themselves to be job ready in situations that allow them to show what they’re really made of. Setting the stage with education and apprenticeship allows participants to get on track to pay their own way, effectively reimbursing the ‘public purse’ that was available to help them when they needed it.                                    

By definition, affordable, with regard to housing/accommodations, is set at 30 percent or less of household income. According to Global News, “a report from a tenant advocacy organization shows that the number of of affordable units in New Brunswick declined rapidly from 2016 to 2021, with the New Brunswick Coalition for Tenants’ Rights releasing a report in early May showing that the number of units priced at $750/month and below and fell by at least 8,600 or 25 percent over a 5 year period. Units available during that time rented for $1,200-$1,499 doubled and those over $1,500 tripled.”

To be caught in the hamster wheel of chasing through each month focused almost exclusively on how to pay for it all is beyond stressful. You and I don’t have to be living in it to know that. Then add a child or two into the mix; small children may share a room, with Mom in the other. Fathers may or may not be involved, or the household’s Mom is actually a Dad playing a dual role. They can’t afford the luxury of wishful thinking when worry about how to put food on the table is foremost in their mind.

Many communities are under-serving those in most need of safe, health, clean and affordable housing for themselves and their families, which often may include the verboten cat or dog. When it comes to pet occupants, size does matter and sometimes concessions can be made if prospective tenants in financial crisis have previously demonstrated that they were respectful of previous home or apartment rentals with their pet in tow.  That respectful care will hold them in good stead if they find themselves in need of new accommodations and hope to include their pet. A person’s housing choices are often attached to the needs of a pet, particularly if the companion animal is the only emotional attachment the individual has in life. 

Prices have taken a huge jump as more and more outside investors are buying up properties with tenants already in place, and immediately doubling or trebling the rent. That practice is forcing people out of the places they’ve called home for years. There doesn’t seem to be much recourse as owners are not in the province and their agent/management staff field all tenant inquiries, sometimes not in a satisfactory way. As more of us become voice for those who feel they won’t be heard, changes will come. Be that person.

There’s health and safety in numbers.

  

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