Guest editorial: Honest conversations about creating home for people with disabilities

A 40-year old friend of mine is looking for a new home. She has a wicked sense of humour. She is the kind of host that loves it when people just drop by (I’m not in case any of you happen to be in my neighbourhood. Please call first).

So, she would like a home that is pretty central. But she also really appreciates some alone time so wants her own space.

She is a dog person. Like one of those people who is interested enough in dogs to stop and chat with someone she doesn’t know who is walking their dog so that she can ask about the dog’s breed and their name and tell them about her own dog.

She loves a good soak in a hot tub and is an avid swimmer – in pools. She is deeply suspicious and perhaps slightly grossed out by the idea of swimming in lakes. She hates bugs. She’d like to be pretty close to the YMCA or another gym and live in the city.

She used to love babies until her sisters started having kids and her nephews ruined the reputation of every child everywhere by being so annoying. Though she does love a good cuddle with her well-behaved grand-niece. So, she really isn’t interested in living right beside a loud park or elementary school.

My friend is crafty. Painting, scrapbooking, that kind of thing. So, an area that has some good art supply stores and group crafting events would be ideal. My friend is kind, and gentle and has the kind of empathy that is almost too much of a good thing. She is a great neighbour.

Home.

“Home is where the heart is,” according to Pliny the elder (27-79 AD).

Or at least, that’s how we feel about home, isn’t it?

Homes, of course, can look like a lot of different things depending on your age, stage in life, location, region, and your personal preferences. There are probably hundreds of types of homes just in Ontario. But each of us, no matter what our home looks like, share a pretty universal ideal of what home means.

It means safety, belonging, love, comfort, choice, being yourself, a base or foundation for life. It is the place you start and end your day. When you arrive home, you escape the world. It is intimate. It is yours. The people you share your home with you are people you love and who love you. Or at least you like them and you choose to live with them. And you get to say when that changes and you want them to leave. Your home is in your community. Your home helps position you for all of the roles that you play in your community.

This isn’t actually true of everybody’s home, of course. But it is true of the ideal of home, isn’t it?

Why am I talking about this? Why am I try to get you to imagine the near-universal ideal of home?

Well, because I’m hoping you can combine that universal ideal of home and my description of my friend and think about what kind of home might suit her.

I want that fixed in your mind. Because here is where things get weird.

My friend also has a recalcitrant seizure disorder, left-sided atrophy, ataxia, debilitating anxiety that causes her to very dramatically lose her cool, contractures in her neck, recent dramatic spinal surgery, and to manage all of her health problems she takes a boatload of pills every day that cause sedation, somnolence, and vertigo. Frankly, for the past four years, her health has been a hot mess. Oh, and she has a developmental disability. She requires a lot of support at this stage in her life.

Her health and disability aren’t the weird part. We’ll all develop health and disability if we live long enough. The weird part is that when I describe my friend in relation to her health and disability support needs, all of sudden the ideal of home starts fading in people’s minds to something that at best can be called “home-like.” Group homes. Nursing homes. Housing, really. Shelter with some supports. There are a few things that are weird about this.

1. There is nothing that fundamentally requires us to change what comes to mind when we think of home no matter what a person’s disability or support needs are – and yet what comes to mind does change.

2. Our National Housing Strategy has resulted in a number of housing projects that are pretty and well-intentioned but do not differ in fundamental ways from the “homes” and institutional services that we just finished closing in our efforts to end the horrors of institutionalization.

3. Confusing language and half-truths are being used in marketing materials and the media and this makes it hard to tell whether we are talking about home or segregated and congregated residential services.

Perhaps I should be specific about the confusing language to which I refer. I’ve recently read articles that have used words like “community, inclusive, neighbourhood, and belonging” to refer to segregated, congregated residential facilities.

Funders are enthusiastically investing. The well-intentioned people who are building these services perhaps believe what they are saying. And people, with great hope and enthusiasm, are signing up or signing their family members up for what they believe is a real home and a place of belonging in the community.

I thought that I would create a quick checklist to help a segregated, congregated residential service.

  • Go to a large, busy grocery store in a city near you. Walk up and down the aisles. If more than 90% of the people you see aren’t eligible to rent or buy a home in the housing project in question then it is a segregated, congregated residential service.
  • Find out if people get to live rent-free or at a grossly reduced rent or receive other financial perks to compensate them for living next to their neighbours. If they do, it is likely a segregated, congregated residential service.
  • Does the housing unit sit on property owned by an agency or government ministry that serves people with disabilities? Then it is a segregated, congregated residential service.
  • Go to the Stats Canada website and take a look at their demographic reports for your region of the province. They are more user-friendly than you might think so don’t be intimidated. Do the residents of the housing unit you are considering look more or less like the general demographics of your region?

No?

How are they different? Is it exclusive because everyone would love to live there but only a few people can afford it? Or is it because the general public isn’t clamoring to live there and only certain people who have few good options are willing or happy to be sluiced into this option for lack of something better? If it is the latter then it is likely a segregated, congregated residential service.

  • Does stuff happen there that generally never happens at home? For example, are there worship services, a hair salon, and food service? If yes, then it is a segregated, congregated residential service.

Or an all-inclusive resort.

  • Does an agency that serves people with disabilities influence who lives where or with whom people live? If yes, then it is definitely a segregated, congregated residential service.
  • Do people market this housing option as specifically for people with disabilities or people with disabilities and one or two other classes of people who need help (like elders)? Then it is a segregated, congregated residential service.
  • If one requires in-home supports and one’s “landlord” provides such support then it is a segregated, congregated residential service.

Now, I know that many people with disabilities are facing serious housing challenges. People don’t have sufficient support or money. People often don’t have enough relationships with people who can help them live a life of belonging in regular community with the supports that they need. People find themselves with limited options and some of these new segregated, congregated residential options might be the best that they can figure out.

People just may not have much choice.

And I also understand that some segregated, congregated residential services may be able to create a facsimile of home. For a period of time.

And I know that many people living in them will appreciate the service – or their family will.

But can we please have honest conversations about this? A segregated, congregated residential service should not be described using words such as “inclusive, community, neighbourhood, and belonging.”

We do a disservice to people with disabilities and elders when we don’t use honest, straightforward language. And we do a disservice to our communities when we create special places for special people and send our disabled, infirm and elders to those special places.

For hundreds of years, we have been attempting to perfect our models of institutional living. Each time we discover that the problems and harms of our new model are the same as the problems and harms of our old model. Yet, we continue to believe that the next version of segregated, congregated residential service is going to be good!

In 1866, at the opening ceremony for the New York State Institution for the Blind in Batavia, Samuel Gridley Howe pointed out that people had been creating prettier and more modern institutions for a long time. Howe had been instrumental in opening institutions for the blind himself. And he recognized that they always resulted in harm.

He cautioned:

“…society, moved by pity for some special form of suffering, hastens to build up establishments which sometimes increase the very evil which it wishes to lessen. Our people have rather a passion for public institutions, and when their attention is attracted to any suffering class, they make haste to organize one for its benefit.

But instead of first carefully inquiring whether an institution is absolutely necessary, that is, whether there is no more natural and effectual manner of relieving the class; and afterwards, taking care that no vicious principle be incorporated into the establishment; they hastily build a great showy building, and gather within its walls a crown of person of like condition or infirmity; and organize a community where everything goes by clock-work and steam. If there be a vicious principle in the organization, as of closely associating persons who ought to live apart, it is forgotten in admiration of contrivances for making steam do what once was done by the good housewife, with her cook and maid; and of the big bright coppers, the garish walls, and the white floors.

But no steam power, nor human power can long keep a vicious principle from cropping out. It has done so in many European institutions of charity; it will do so in many of ours.

Good intentions and kind impulses, do not necessarily lead to wise and truly humane measures.

Nowhere is wisdom more necessary than in the guidance of charitable impulses. Meaning well is only half our duty – thinking right is the other and equally important half.”

While it might be that some people lack the support, money or relationships to facilitate having a real home as opposed to a segregated, congregated residential service, I urge all of us to be honest in our language, our dialogue and in our appreciation of the consequences of how we decide to respond to our “good intentions and kind impulses.”

As for my friend? I’m not sure what she will figure out for her home. She faces a lot of barriers and challenges and there are no easy, obvious or straight forward solutions for her. What I do know, is that we will continue to have honest conversations with her about what she is facing, what home means to her, and our ability and our inability to help her achieve a home that can honestly be talked about using words like “inclusive, community, neighbourhood, and belonging.”

Genia Stephen, Good Things In Life