Last week my (very awesome) sister and I had dinner. I listened as she talked about her boyfriend’s job as a Support Worker in a group home for teenaged youth with intellectual disabilities.
My sister described the horrible events her boyfriend had experienced that weekend at work: spur the moment, him and a colleague filled their work van with the group home residents and brought them to the mall to shop for the day. What started as perhaps a well-intentioned activity quickly devolved into a public crisis: one of the young men was, as my sister put it, “exhibiting behaviours that required physical restraint” (yelling, acting erratically). In his role as a Support Worker, my sister’s boyfriend was trained by his employer to physically (and quite publically) restrain the youth until police showed up. Boasting with pride, my sister detailed how her boyfriend knew and practiced several methods of restraint; when the cops showed up, he was able to “talk their lingo” without it escalating into criminal charges.
Preamble: I am an advocate for individuals with intellectual disabilities, through my involvement with Best Buddies and LiveWorkPlay. I think it was for this reason that my sister proudly told me this story, expecting my verbal praise of her boyfriend and what she interpreted as his heroic, selfless actions towards a harmful individual.
Being an advocate means different things for different people… because of my dislike for confrontation, I believe the way that I contribute as an advocate is by “leading by example”, teaching people in the community (a safe space), for the most part without having to speak about it. A typical volunteering session with Best Buddies or LiveWorkPlay is simply meeting up with my match (a friend who was paired with me based on shared interests and personalities… who happens to have an intellectual disability) and enjoying something we have in common: Zumba classes at the gym, shopping outings at the mall, swimming laps at the local pool. On a large scale, these simple “hang outs” provide opportunities for community members to build relationships with people with intellectual disabilities (and vice versa) outside of the segregated spaces imposed by our communities. On a smaller scale, but no less important, this type of volunteer work allows both me and the person I’m volunteering with to gain new experiences and friendships… because who doesn’t want that?!
Anyway, back to the story.
So my sister tells me this story and the obvious reaction she is expecting from me is praise for her boyfriend for the work that he does. Instead, she sat in a horrified silence as I divided my rebuttal of her story into several parts, which I will now outline.
In my sister’s retelling of events, she mentioned on several instances the young man’s “behaviours” and how ultimately this was the reason he had to be restrained.
Why is it that we assume that someone with an intellectual disability is behaving negatively because of their disability? I’ve heard this idea numerous times, in particular from teacher friends of mine who struggle with the students “with behaviours” in the classes they teach. Read this study that found that parents of children with intellectual disabilities fail to mention to medical professionals negative behaviour, assuming that the behaviour is due to the disability and cannot be treated.
Behaviour is undeniably casually linked to environment: a healthy, loving, supportive environment produces good behaviours in people; thus the opposite would also be true.
If we saw a loved one lash out, especially in public, would we not first start by analyzing our loved one’s environment to try to figure out the cause of their negative behaviour?
So let’s look at my sister’s story again, imagining that we are at least able to empathize with this young man, rather than reducing his public meltdown to behaviour with no justifiable cause.
Why did he lash out?
Here are just a few of many possible reasons…
This guy is a teenager. Maybe he is conscious of the fact he is being chaperoned to the mall, unlike peers in his age group. A meltdown in his mind might make the support workers see that he is strong and able to make his own decisions, despite everyone making them for him.
This guy is a guy. Maybe he noticed a cute chick who he thinks is noticing him too… but he knows he has no shot when he’s being chaperoned like a child. A meltdown might be humiliating in front of this girl, but maybe in his mind he knows there’s no avoiding feeling ashamed in front of her anyway, and that’s frustrating.
This guy is an individual. Maybe he didn’t want to go to the mall at all… and maybe he didn’t want to go with the people he lives with, who are just driving him crazy! Maybe he wanted to stay in his pyjamas all day and eat cake for breakfast and binge watch 90s TV series on Netflix (me, every day). Maybe he wanted to go biking, because winter is coming and he is already feeling the long days ahead without fresh air. Maybe he had a very good reason to be in a really effing bad mood (me, at least once a day).
A few years ago, I was training to be a fitness instructor with the goal of making some extra money on weekends teaching workout classes to individuals with intellectual disabilities. I told a respected friend who works in the field (hi, Caitlin!) of my plan. Rather than being excited for me, like I had expected, she taught me a lesson I will never forget: no one benefits when people are segregated. When people with intellectual disabilities are segregated from the community in costly group housing, “special needs” classes, and educational development programs that lead nowhere, everyone misses out. Segregation prevents the general population from benefiting from learning how to support someone with intellectual disabilities; it forces the community to miss out on experiencing what people with intellectual disabilities have to offer; and it blocks people with intellectual disabilities from reaping the benefits of belonging to community (safety, relationships, employment, activities). Click here to read more about benefits of and strategies for supporting community participation rather than segregation.
The modern day group home is based on a centuries-old model of community and belonging in a time when there was virtually no support for families of individuals with disabilities (not that there is enough support today, but there was far less). Huge state-run institutions staffed by medical professionals and religious orders housed individuals with disabilities from birth to death. Like prisoners, residents of these institutions were raised in an environment where love and family was either non-existent, or at the very least, temporary; physically separated from their communities and barred from making decisions; and left dependent on and vulnerable to the staff working in these institutions. When researchers and newspaper reporters began to show the depth and scale of the abuse (sexual, physical, emotional, financial) perpetuated by and hidden within these institutions, many were shut down (yay!).
In Canada, these large institutions existed until very recently. I was fortunate enough to meet a woman with intellectual disabilities who I became very close with. As we were getting to know each other, we shared stories about our friends and families. She showed me a picture she carried with her in her wallet. This was the only picture she had with her family, 50 years earlier, her beautiful toddler eyes wide and full of love as she clung to her mother in a family photograph with her father and 8 other siblings. This family photo was the last one with her in it, taken weeks before her mother left her in an institution with over 100 other individuals of varying ages with disabilities, at only 3 years old. Over the years, her siblings and parents would visit here and there, but eventually her parents died, and her siblings married, had children, moved away.
Unfortunately the closing of these large institutions did very little to change societal mentality towards people with disabilities. While the larger institutions closed their doors, smaller group homes began to open. By their nature, group homes receive financial support from their residents, which covers the cost of the housing, staff, food, and sometimes activities. Group homes literally profit from the dependence of the people they support. Keeping individuals dependent is in their best interest financially, which is often why people living in group homes are unable to take the bus, cook a meal, get a job, or make outside friends… because learning these things would demonstrate someone’s ability to live outside of the group home setting, and this would not serve the group home’s needs. Residents are segregated from the community and taught to be dependent upon staff, making them vulnerable to the same forms of abuse (financial, sexual, emotional, physical) that existed in larger institutions.
The provincial government’s Together we can Stop the Hurt campaign reports that 3 out of every 4 women with intellectual disabilities have been victims of violence; adults with developmental disabilities are 3x more likely to be physically assaulted; and 10x more likely to be sexually assaulted than someone without a disability. This campaign acknowledges that group homes have been breeding grounds for abuse. Relatedly, they detail how “acting out” could be a sign of abuse. Warning signs included aggression, sudden change in feelings about a particular person or place, and self-destructive behaviour.
Segregating the young man in my sister’s story had several negative results: a public meltdown; a crisis wherein the public eye watched as physical restraint was used on a individual with intellectual disabilities; the escalation of the event to police management. People who witnessed this happening no doubt felt scared; likely so did the young man, anticipating the physical restraint he knew was coming. However, at no point in the story did anyone question the reason the youth lashed out, and certainly there was no investigation into the possibility of abuse.
Group homes are themselves a form of restraint; those within them physically restrained from participating in the community and/or making their own decisions. When escorted into the community, residents are often aware that they are being supervised. They live knowing that “negative behaviours” will result in a response of physical restraint.
I don’t know about you, but I would live in constant fear knowing that someone who lived with me was permitted (not by me, but instead some higher authority outside of my control) to physically restrain me against my will simply because of how I was acting.
Anyway… How is this not work that should be reserved for police officers? Read: Let’s Eliminate Physical Restraints in Group Homes.
In my mind, there are very few reasons why someone should be restrained; in no situation should physical restraint be routine. In the case that it is, rethinking the person’s environment is absolutely necessary, with the goal of determining the cause of the behaviour requiring restraint. Unfortunately, these incidents are commonplace in group homes, seemingly necessitating the training of staff in restraint methods rather than exploring the root of the problem.
Community: Moving Forward
While it’s clear what the problem is, my solution may be nothing more tangible than 2am theorizing about how I want to raise my daughters to value all individuals in their community.
At this point in my explanation, my sister interrupted me and rightfully asked: So where do people go if group homes are no longer an option?
Quite simply, it is my belief that if people are taught and supported to be independent, they will be. Well-supported families would not need to opt for respite or plan for long-term care from group homes. Adequately supported individuals with intellectual disabilities would be able to choose to live independently within their community.
Support from individual to individual would vary greatly, but everyone in a community requires support. There are many different types of paid and unpaid support that people with intellectual disabilities might need in order to establish a healthy living environment within the community: extra time spent learning bus routes to/from the grocery store, support in communicating effectively to maintain friendships or employment, having a written list of names and numbers using images to call in case of emergency (and ensuring that there is someone available at every hour of the day), support in explaining and facilitating financial decisions that will solely benefit the individual, encouragement in developing and maintaining relationships.
It is a common reaction to assume that group homes are protecting individuals with intellectual disabilities (when we know they do the opposite), and wrongfully conclude that supported independent living cannot provide the same form of protection.
Belonging to a community is safe. People in a community feel obligated to look other for one another, as the safety of everyone within the community benefits everyone.
If people in a community were encouraged to look out for each other, we would all be safer. Just like I feel safe knowing another person is waiting with me at night at a bus shelter, an individual with an intellectual disability might feel safe knowing the neighbour across the hall is available should support be needed.
Don’t we want to live in a community where we, and all of our neighbours, feel safe?
If not… do you then feel comfortable living in a community that allows for pervasive, public abuse to happen? Because the existence of group homes encourage lack of accountability and responsibility of the community while perpetuating the understanding that individuals with disabilities are both different and dependent. Group homes allow for this population to be hidden and sheltered, which ultimately and counterproductively does very little for the safety of the community and the individual.
Like our textbooks detailed the horrors of WWI and WWII, the impact of residential schools on Indigenous families, and the dangers of living as a Muslim post-9/11, it’s my belief that students of the near future will read about how the communities they live in once excluded and segregated people with intellectual disabilities, causing great harm.
Change is slow, but it must be intentional. Will they read that people stood by and watched it happen? For how long? What was the result? Will they read about communities of individuals that worked to change the status quo? Will you be part of this transformation?
Donate time or money. Volunteer… on boards of directors, directly with others, at large or small events, or your skills. Advocate fearlessly, in whatever form you are comfortable with. Challenge your own thinking, challenge how others think, and challenge the silent exclusivity of your community.
Go. Make change in the ways that you can.