Meriah Main, Vancouver:
I’m about to criticize your article. And I’m not a parent who fears your child will “give less” to my child than another typical child. I’m not a parent at all.
I’m a 30-year-old woman, and the only person I know who has true, genuine friendships with individuals my age with cognitive disabilities. And your article irritated me.
For the simple reason that these friendships I mention above, have grated on me and worn me down over the years and I’ve come to the belief that it’s a high expectation to think your child will have friends.
I wasn’t always so jaded.
Let me tell you who I am and how I came to be me.
I was always fascinated by the kids with disabilities at school: “Why does Jane bite herself?” “How does Billy say Hi?” I came by this never-ending curiosity genuinely.
I had parents approach me in elementary school and say “Thank you for being so-and-so’s friend! She talks about you all the time.” And, sure that was nice…but the true reward for me at that young age was spending time with people who interested me and who I had fun with.
By the time I was 12, I had been connected, by my school, to a magical, wonderful place. It was a project put on by the local park board that aimed to foster relationships between youth with disabilities and youth without disabilities. It was an amazing time.
From the age of 12 until I was 23, I put my heart and soul into this program. The set up was: 10 youth with disabilities, 10 youth without disabilities, three amazing staff. Every day in summer, and every Saturday during the year, we would all get together and do fun stuff.
During the years I was a part of this group, I met many, many great friends.
I made friends with a girl my age there. She is non-verbal and has challenging behaviour and communicates very differently (sitting in the middle of the road and biting herself might be how she would say “I don’t want to leave yet” for example).
I found her adorable and fascinating and funny and I learned not only how to communicate with her, but to read her mind. And she learned the same of me.
Over the years, she and I have spent plenty of unpaid time together. I have also been paid to support her periodically.
In fact today, at age 30, I remain friends with her in addition to many other close friends from that program—some with disabilities, some without.
So what’s my point? This all sounds great to you I suppose. This is what you’re talking about!
This program lived and breathed disability rights, inclusion philosophy, people-first language.
But I must say, I was the only person from the hundreds of typical youth I met there that actually branched out and became friends with any of the youth with disabilities.
Everyone had a good time. But developing friends in the true sense of the word. No. Only myself.
During the 10 years I was involved in that, I also worked in various settings supporting people with disabilities in the community. My job was to “facilitate community inclusion and build relationships.”
It was impossible.
I was their friend more than anyone in the community. Yes I was being paid but the blatant reality was that the support staff were the closest things these people had to friends and creating them in the community was impossible. Believe me, I tried.
In addition to these two endeavours, I also spent time living in an inclusive house hold where myself, two friends and the girl I spoke of above lived together as roommates.
My typical friends tired quickly of her sounds, behaviour, waking up at the crack of dawn excitedly. It was like having a little kid around.
And the truth is. It is.
What I describe above is my life as a friend and advocate of friendship between individuals with disabilities and typical kids/ teens.
It doesn’t really work because as we grow up and become adults, our interests and priorities change.
I’ve let go of friendships with typical people because our life paths began to go in different directions.
I’m married now and I’m much less interested in talking with my 21-year-old co-workers who want to talk dating.
My friends with kids bore me going on and on about their child’s potty training.
And my non-verbal friend who bites herself when she’s upset is draining on me. It feels like baby sitting on top of my already chaotic life
This isn’t to say that I dump friends when they bore me but the reality is friends come and go and people who don’t share anything in common with their peers aren’t likely to offer stimulating friendships.
I have two questions for you.
Do you have friends with cognitive disabilities that you take time out of your week to go spend time with?
Second, do you think you would have friends with cognitive disabilities if you never had a child with a disability yourself?
It was fun for me when I was young and curious and part of an activist group. But when you become a teenager and your world is dating and talking about life, when you become an adult with a million responsibilities, these friendships become irrelevant.
It’s hard work to maintain even my most fruitful friendships in life, let alone ones where conversation isn’t stimulating and we share nothing in common.
I do maintain these friendships, mostly in the form of paid respite (with occasional unpaid stuff), but I do not expect that this should be typical. I’ve never even seen it occur except for with myself and it’s become a lot of work.
And a quick add on, which is in response to something you say in your article: Why, if families of people with cognitive disabilities can have rewarding relationships with these individuals, why can't others?
Simply put. Family is family.
Family is a different relationship than friendship. And to some extent family carries obligation that friendship does not.
Louise Kinross, Toronto:
I really appreciate your writing.
I think your first question is a good one—do I have significant friends with cognitive disabilities?
I work in a children's rehab hospital, so I have acquaintances with many people with physical and developmental disabilities. My closest friends are parents who have children with disabilities. Because of my role here, some adults with cognitive disabilities have “friended” me on Facebook. I have gone with my son to a L'Arche arts program for adults with intellectual disabilities and participated. I do not have a “best friend” with a cognitive disability. During my school years (because I'm an ancient 52) children with disabilities were not in our schools, they were segregated.
I think that first question is a fair and good one. And I don't know if it will change in the future. At some point I hope my son—now 21—will move into some kind of independent, supported living and I would imagine that will be with roommates with disabilities, so perhaps I will have the opportunity to get to know adults with intellectual disabilities more deeply. My son was mainstreamed for most of his high school years.
Your second question—would I have had friends with cognitive disabilities if I didn't have my son with disability?—I think is irrelevant in the sense that I want to live in a world where we are always making more people who are marginalized—for any reason—feel included and part of the mainstream. Just because I didn't have exposure until my son was born to people with disabilities doesn't mean that I want that to be the status quo in the future for people growing up.
I do accept that because of the degree of a person's disability—especially if they can't speak like my son, and use sign language which is not generally understood—that there are massive obstacles to having what would be considered true friendships.
I accept that but I don't just stop there and say it's impossible. And given what you've written to me, even though at some points you say “it's impossible,” you are also telling me that you continue in some ways to have relationships with people with disabilities.
I will keep in touch and I do value you writing to me, and your honesty, very much.
Meriah Main, Vancouver:
Thanks for your response. I was honest with you because we don't know one another. It was easier to say to you, than parents I know. I responded with frustration because it's something I've heard from parents over and over.
Additionally, “facilitating friendships” is a goal of the community inclusion movement and through my experiences, I’ve become frustrated with this philosophy and I've come to believe that the focus must be shifted in order to achieve this.
I believe the shift must be in two essential areas: creating opportunities for friendship and redefining friendship.
If more inclusive and communal space is created, I believe these communities can provide friendship for individuals with disabilities. Even then, I don't think friendship will look exactly the same as it does between two people without disabilities, but I don't think that matters.
“At some point I hope my son—now 21—will move into some kind of independent living and I would imagine that will be with roommates with disabilities, so perhaps I will have the opportunity to get to know adults with intellectual disabilities more deeply. My son was mainstreamed for most of his high school years.”
This point supports my message which is essentially that, unless people enter our lives on a natural basis AND it becomes somewhat “easy” to be in touch on a regular and ongoing basis, a friendship is unlikely.
Creating more stimulating inclusive spaces (youth groups, places adults can go during the week and communal living like L'Arche communities) is the true answer I think.
My husband has a physical disability. We rent our upstairs to Ariel, an individual with a cognitive disability. As both my husband and Ariel need support, they share some of support, which saves both parties money and makes for a great, mutually beneficial friendship.
"Your second question—would I have had friends with cognitive disabilities if I didn't have my son with disability I think is irrelevant in the sense that I want to live in a world where we are always making more people who are marginalized—for any reason—feel included and part of the mainstream. Just because I didn't have exposure until my son was born to people with cognitive disabilities doesn't mean that I want that to be the status quo in the future for people growing up."
I share your perspective. I don't think we should all just settle with the current state of things. Pushing for change is how the world becomes a more aware and accepting place. The reason I asked that question was to say: How can we expect people who have not been touched by cognitive disability to care or to try to make friendships?
Again, I think the answer is creating more inclusive situations...And ones that are mutually beneficial. This way, people gain exposure.
“I accept that but I don't just stop there and say it's impossible. And given what you've written to me, even though at some points you say ‘it's impossible,’ you are also telling me that you continue in some ways to have relationships with people with disabilities.”
Totally—we should never stop fighting and hoping for a better future.
And, yes I have these friendships—but I don't find them inherently mutually beneficial in the same contexts I do my typical friends.
This is why I think that deciding to redefine our, frankly, ableist idea of friendship will, in turn, create more friendship for people with disabilities.
Ableist because the friendships I hear people wanting for their children, and the friendships it was my job to form—were friendships that look just like the ones you and I may have.
The redefinition in my mind means both seeing the interactions that happen within structured communities (schools, day programs, group homes) and embracing that many friendships come in the form of paid staff.
If we can accept these two things, we can create more inclusive spaces and celebrate and support the true friendships that exist between paid staff and the people they support.
And you're right. Not impossible.
After I sent the email I remembered two other people I know (both people who are paid support for individuals I know who take significant unpaid time out to maintain friendships with the people they support).
Paid support people are actually some of the truest forms of friendship I've seen. My husband just made a fantastic point and said “Who cares if they're paid? They aren't paid to be friends.” They are paid support and within this natural, mutually beneficial situation, a relationship is often formed. This doesn't mean that every support staff is a friend, but I think that if a relationship is formed, it shouldn't be undermined. I believe it is just as valuable.
Even if they disappear after they quit.
Friendships come and go for everyone. I think that because individuals with cognitive disabilities live in different circumstances, their friendships exist within different circumstances.
Anyway, thanks for listening. This is stuff I have thought long and hard about.
At one point in my life it was my goal to create inclusive spaces like I describe above but life has gotten busy. It's still something I certainly hope for in the future.
I would love my friends with cognitive disabilities to have more enriching daily lives and bigger social circles into their adulthood. This said, I do think parents (and others with the passion and energy) must put their energy into community.
Louise Kinross, Toronto:
Thanks so much for your detailed response. I’m particularly interested in your thoughts re paid staff. Right now my son is doing a planning process through our government, and I know that one of their goals is that over time the person have more interaction with people who are not “paid.”
Perhaps this is a misguided approach.
Meriah Main, Vancouver:
We can chat about the paid friend thing anytime.
As you said—it’s not impossible but I think it's a set up for disappointment for families to set out in the community looking for meaningful unpaid relationships in the contexts we're looking in.