Recently my 9 year old son Franek and I had a chance to give an interview to the Toronto Sun as part of a series of articles focused on children attending Variety Village – an inclusive and accessible sport complex in Scarborough. Franek comes to Variety Village for his physiotherapy and swimming and, since last year, to many inclusive camps and activities. It’s incredibly rare to have an access to a place that welcomes disabled people without reservations or judgement. After many disappointments in trying to sign up Franek for public or private summer camps, where, to say the least, we didn’t feel welcome, we finally have a spot where he can attend a camp all day with his peers, go swimming and have fun.
We were excited for the interview – so rarely we get to see representation of disabled individuals in the media. And rarely we see them presented as humans and not just an inspiration story. My son is nonspeaking and communicates using an AAC device. Despite decades of research and evidence supporting robust symbol based communication, a majority of nonspeaking individuals don’t get access to quality AAC and are not even informed it may be an option. That’s why it was so important to us that Franek’s Talker (as we call his communication device) is the focus of the interview. And I was glad he was comfortable enough to use it to chat with the journalist a little bit.
It was equally important to us to focus in the interview on how important true inclusion is. Franek is now in grade 3, in a regular class in a local school. It sounds so simple but I say that with pride, as it is a result of our determination and advocacy. It wouldn’t be possible without the support from various amazing inclusion advocates whom we met through Inclusion Action in Ontario, especially Marilyn Dolmage. Kids like Franek, with intellectual disability, nonspeaking, different from their peers, are rarely offered fully inclusive placement as the first choice. In fact, many parents don’t know or are mislead to believe segregated classes and schools are the only option. It wasn’t obvious to us either- Franek went to a “special needs” preschool, as we didn’t know any better.
When we decided to advocate for his regular placement in JK, the teachers in the preschool did not support our efforts. However at that point we knew we wanted Franek to be a member of our local community, in the center of all the action and not in a room at the back of the school. We wanted him to make friends, to learn alongside his peers, to be valued and needed and missed. Our school journey was rocky, required our constant efforts, presence, persistence, becoming a squeaky wheel. The school system is rigid and bureaucratic and suffers from ableism. We met wonderful people along our way – teachers, principals , education assistants – but often it was the system, the top down rules of assigning people and resources, that was making things harder for school and for us. We are forging our little path in that system, hoping that small changes will eventually lead to systemic improvements.
You can see the full Toront Sun article here.
