The Ripple Effect of Exclusion

By Katie Jameson

This article was originally published on the author’s blog, This Neon Life. Reprinted by permission.

I am not asking for much. Only for my daughter to sit in a community space and create art like any other nine-year-old child. She has a developmental disability, and the community she lives in relentlessly uses it as an excuse to exclude her.

When she was a six-week-old baby, I watched a therapist cup my daughter’s torso and neck in her hands, modeling how I should support her body’s low tone. As I watched her hands shift my daughter’s body ever so slightly, she smiled at me and said, ‘Just the smallest change can make a huge impact on her.’

Down syndrome never felt scary to me; though, from the very beginning I could see how it frightened nearly everyone else. I have witnessed her community’s assumptions that she will never be able to contribute value, and I have watched as she is treated as valueless. My heartbreak feels difficult to explain; seeing a quiet belief flash behind someone’s eyes, knowing their actions and lack of inclusion today leads to a future of loneliness with possible deadly results. Still, I never could have envisioned our community’s systemic failures as they are today.

Most recently, my nine-year-old daughter with Down syndrome was denied access to a community-based art program.

I enrolled my daughter in an art course at 4 Cats, a well-known and highly recommended art studio for kids with locations in Vancouver, British Columbia. It was a three-week workshop set on Wednesday nights for a few hours with kids her age. The goal was for her to enjoy doing what she loves outside the walls of our home. The goal was for her to be immersed in her community, taking up space and belonging. I hoped for her to experience something she loved alongside peers, an opportunity she rarely receives. This was to be my daughter’s first ever experience in a community class, three nights sitting in a room with kids her age, feeling happy.

When registering for the sessions I noted my daughter’s unique support needs, which include requiring an adult to help facilitate the activities organized by the studio. From experience, I knew that community programs seldom provide the necessary support for a child with a developmental or intellectual disability to engage in programming. This is a barrier often in place, and I offered to assist her during the three classes, supporting her through transitions and the evening’s activities, and I emailed the studio to express my excitement for my daughter to participate; she has a remarkable eye for colours and painting.

The following day, I was contacted by 4 Cats and told that my daughter could not attend the art workshop. The studio manager emailed me stating “our policy is no observers during class. Unfortunately, we can’t make exceptions to this policy and cannot have you in the class.” She offered my daughter a different class, catered to kids and parents, not peers. The manager explained that the presence of an adult in the room, no matter their role, would disrupt the experience of all the other children attending, and the option for my daughter was to have a parent support her on the weekend instead.

I am familiar with exclusion being framed as support. I understand the specific support my daughter relies on is the reason she is not welcomed at all. I recognize that well-intentioned policies often mask the reality of exclusion. However, I had no idea that an art class for kids would so clearly exclude a child based on their disability.

I responded to the manager of 4 Cats, stating there must have been a misunderstanding. I emphasized that enrolling my daughter in the weeknight class was intentional, we were searching for a shared experience with her peers. I explained that if 4 Cats had someone who could support my daughter in their studio, I would be happy to stay out and not attend. All I wanted was for my child to be included.

‘4 Cats is not equipped or trained to support children with specific needs,’ I was told. Instead of accommodations, the manager from the Kitsilano Studio emphasized the 4 Cats policy of “no adults.” There were to be no exceptions.

My daughter, and what she needs to thrive in a joyful art class experience, was a disruption.

A second family has since contacted 4 Cats, who has a daughter with complex medical needs. This eight-year-old has a tracheostomy and depends on a nurse, or parent, at all times for medical support. When this family contacted 4 Cats at a second location, asking for accommodation for their child, they were told the same thing. No adults, no exceptions. Her daughter could not attend.

4 Cats denied two children an art class because they need support. These two children need support because they have a disability.

It is impossible to call this anything but discrimination.

Beyond the blantant discrimination and exclusion of my daughter from something as simple and joyful as an art class, lies a broader systemic failure that refuses to go away. People with disbilites cannot access community support.

In an article from The Tyee, journalist Katie Hyslop reports on the recent investigation of exclusion in schools by the Ombudsperson, who represents British Columbia’s independent voice for fairness and accountability. The article quotes Karla Verschoor, executive director of Inclusion BC stating that schools are “seeing an increase in the severity of complaints from parents of students with disabilities, as well as school administrators and teachers themselves, about school exclusion in recent years.” The exclusion of kids with disabilities within many school districts in our province has never been a secret, and this investigation is revealing that caregivers and parents have long been sharing that exclusion is only getting worse. In my daughters elementary school experience so far, we have witnessed a glaring difference of what inclusion means depending on which school she has been enrolled in. My daughter has been welcomed with open arms and supported wonderfully. She has also been forgotten so terribly that our family pulled her from a school and applied cross boundary. Administration’s mindset creates a trickle-down effect that holds true whether it’s a school or a community art program.

If my daughter is valued and believed to contribute meaningfully by everyone around her, we see her surrounded by peers. If she is regarded as a burden or a problem to solve with nothing of value to offer – we see her alone.

People with developmental disabilities often spend their entire lives without the support they need to thrive and lead meaningful lives. Recently, the Representative for Children and Youth released another report emphasizing the urgent need for immediate action for children and youth with disabilities in BC. Their report states that access to “inclusive community and recreational programs, as well as spring and summer programs,” is among the top five service needs that provides wrap-around support that benefits an entire family unit. “These types of programs do more than provide children with social and developmental benefits of belonging – they also give caregivers much-needed respite, lifting up the whole family.” Families are struggling, yet the community, which is in a position to change policies and welcome children with support needs into their spaces, is just standing by, watching. The report reveals that 70% of the 12,000 individuals under age 19 living with a disability in BC did not receive the necessary services and support required for their well-being. Services like speech language pathology and physiotherapy create lasting positive effects for my daughter; they help her navigate a world that was not built with her in mind. Without those services, she cannot participate or communicate effectively to ensure her inclusion in school or programs, and adults tasked with teaching or coaching her begin to believe that she cannot be taught or cannot play.

The cycle of exclusion can have tremendously dangerous results, seen in the life, and death, of Florence Girard, a 54-year-old woman with Down syndrome living in a government-funded share home in British Columbia. Her death was ruled a Homicide by starvation, weighing only 50 lbs when police found her. A Coroners Inquest revealed sweeping systemic failures in the oversight of care for someone like Florence; she had been left alone, those who were responsible for her care had forgotten her, and the idea that my daughter could be immersed in this horrific situation after I am gone terrifies me beyond measure. Florence did not spend her aging years surrounded by a community that believed in her, she did not experience wrap around support. Florence did not benefit from a core base of inclusion that set a foundation of belonging from her youth to her final days. The heartbreaking fact is that Florence Girard is proof of what happens when society decides that some lives matter less than others. Florence lived, and died, in a community that did not notice her unique spark was missing from it.

There is a clear and direct line running between the exclusion happening in schools, the lack of funding and supports for families of children with disabilities, the death of a woman with Down syndrome in government-funded care, and the exclusion of a nine-year-old child with a developmental disability from a community art class. They are all connected, they all behave as the backbone for each other to exists. If my daughter continues to be excluded from anything that connects her to friends, connects her to opportunities that build passions for hobbies, if she keeps being excluded from anything that allows her to succeed and contribute meaningfully to her community, the effects will be lifelong. She will experience catastrophic isolation, and her community will continue to believe that it’s okay for her to be excluded, because it’s all they’ve ever known.

In a 2014 research article, it was reported that 50% of people with intellectual disabilities are chronically lonely. This statistic reveals that for someone to feel chronically lonely, it would need to happen all the time. Maybe, every day. It makes me think about how segregated schools can be, and how a child with a disability won’t sit in a classroom with peers. It makes me think about how playgrounds are often inaccessible, and a child with a disability will often watch their peers play from a distance. It makes me think about how sports don’t offer support, and kids with disabilities regularly don’t play on teams with peers. I think about summer and winter programs, how they rarely register a child with a disability, and that child will spend so many summers and winters alone, not with friends. It makes me think of a teen trying to get a first job, and no job will take them. I think about how a kid who grows up not being included, becomes an adult who will feel lonely every day. And I think about how this is the fault of society, the fault of barriers always being in the way. The fault of bias, and the fault of a community who continues to exclude someone like my daughter from everything that is a doorway to connection and joy. This statistic makes me worried for my daughter’s future; my daughter who is vibrant and funny and incredibly capable of being a good friend. She is capable of learning and participating, as long as she is surrounded by people who believe she deserves to learn and participate, who offer her the support she needs, and is entitled to.

The exclusion of my nine-year-old daughter today, contributes to the inherent bias she will encounter as she grows older.

Allowing a community art class to maintain a policy that openly discriminates against my daughter and denies her access to opportunities for fun and friendship, further ensures a life in which my daughter is more easily disregarded as an adult. Small businesses and programs are of course, allowed to make their own policies and rules, but the hope is those policies make space for everyone. When businesses and programs are aimed at supporting the community, and the policies in place are sweeping statements of exclusion towards the most vulnerable within that community, the ripple effect is a self fufulling phrophecy – no one see’s disability, so no one expects it.

When we uphold the notion that individuals with developmental disabilities are less deserving of a life rich with experiences and connections, we are cementing a future marked by isolation and loneliness.

We are creating the possibility for someone to starve to death, forgotten and alone.

Nine years ago, I had no idea that the advice from my daughters very first therapist would prove to be what our world desperately needs to hear.

‘Just the smallest change can make a huge impact on her.’

My daughter often has no opportunity to share experiences with peers in her community because community programs systemically do not include a child with a disability. I have found through the years that her particular developmental disability stretches her even further from where her peers can so easily go because a child with a developmental disability has historically and repeatedly been left out and left behind. When the manager of 4 Cats in Kitsilano called to speak with me, she told me she understood my frustration and that “a family like mine” must find it very frustrating to find programs for my child. And yet, she changed nothing. ‘No Adults allowed’ may seem like an across-the-board rule for this studio, but in practise, it becomes a tool to keep out children who need support.

‘Just the smallest change’ in this case would be allowing a child with Down syndrome to attend a Wednesday night class with kids her age. The smallest change in policy could have created a richer experience for all the children in that room. And, it would have brought my daughter joy.

I am not asking for much, yet our community insists that what I am asking for is impossible. I only want my daughter to sit in a studio and create art like any other nine-year-old child. She deserves to grow up surrounded by adults who were raised to believe she deserves that opportunity as much as they do. She deserves to live in a community that has decided creating access for her participate as a child will lead to an adulthood full of possibility. She deserves that chance. She deserves to experience joy from the center of all that takes place – not at the outer edges of everything. I am not asking for too much, just for you to finally look, and witness what is happening for people with developmental disabilities around you. I am asking for the smallest change, to create the biggest impact for all kids, but mostly, for a child who paints the world in neon colour.

I am exhausted by the constant fight to have my daughter included in programs that enrich her life and bring her joy. My advocacy today is writing this article, and tomorrow I will try again. In the mean time, you can contact your kids childcare, their spring and summer break camps, their soccer coaches and swim instructors, the local art class your child enjoys – and ask them how a child with a developmental disability could participate. Ask them what it would take to include someone like Kenzie. This question alone brings the lack of inclusion of children like my daughter to light, and at the very least, makes an organization aware that they have work to do.

Share this essay. Get this in front of as many eyes as possible. The more we share what is happening for people with Developmental Disabilities in our communities, the more we help shape a life with more access and belonging.

Thank you for reading.

Xo

Katie