I’m living with angst. And no, that’s not a veiled way of describing my husband, children or dog.
I never thought being the parent of children with disabilities meant I’d be so keyed up for ministry announcements- heck, anytime the government makes an announcement, I’m listening. I now have new.ontario.ca on my list of favourites.
The last time we had a major shift in provincial leadership was 2003, the year my second of four kids was born. At that time, I was not the parent of two medically-fragile children. I paid minimal attention to the budget changes, and I was frankly more interested in anything but the budget. It didn’t seem to directly impact my day. If I wanted to learn more about politics, I read the paper, watched T.V. or listened to the radio. If I wanted to.
Fast forward 15 years, and we have new leadership in the province. I’m a mom of four girls now- two who are medically-fragile with complex care needs. Being a mom of children with disabilities means the budget and any government announcement matters. A lot. Fifteen years later also means I learn sooner from my phone than the newsstand - and this instant hit of news means I have the option of tweeting, tagging, and posting directly to our leadership.
And what do I trust more - what I see on my phone or what I experience in my day-to-day? Sometimes, the conversations on social media only serve to feed a narrative that hasn’t happened. As Brene Brown would describe it, with all the uncertainty for the future, we’re starting to make up and believe stories that haven’t happened yet.
As a parent of children who live with disabilities, this is my angst:
It’s personal. Each parent and caregiver and adult living with disability has a story to tell. It often includes layers of pain and promise. For many, there is little to no safe space offered for exhaling and talking through the very real daily challenges. When there’s no space to process the heartache, bitterness and anger can take root.
With all the significant changes happening one after another, it feels like we are functioning in the reactive stance. It feels like we are moving towards divisive advocacy - instead of diverse collaboration. Why does it have to be either/or? Why can’t it be both/and?
I want our government, our public service providers, and our private sector to all play a role in supporting families who have children with disabilities. When everyone is involved, we hold ourselves accountable to the greater picture - that of a future where everyone can access the supports they need to thrive according to their own abilities.
I like my local public schools. I want to see them accessible and successful with all students. I like my local faith community schools. I want to see them accessible and successful with all students. I want to see funding available to support families of all disabilities, and I want to see accessibility and success for all through our publicly funded children’s treatment centres.
I wonder what a barrier free Ontario looks like where everyone can access the public and private spaces. The Legislature voted unanimously to create a barrier-free Ontario 14 years ago. Referencing the Honourable David Onley’s report, we’re behind schedule.
I wonder what public service provision for children of all disabilities with additional directly funded enhanced wraparound care looks like. Our family depended on our local Children’s Treatment Centre in those early years; if I had to source out my children’s therapies, I would have been lost. Now that I’ve learned to navigate the system, I am better positioned to access supports with less leading and guiding. I wouldn’t be here without that essential public service provision. However we support families and individuals must be inclusive of all abilities, capacities, competencies, and geography.
Reflecting on the response of families and individuals to recent government changes with social services and disabilities, what if all service providers were mandated to have a family/patient/client advisory council that offered perspective which spoke directly to outcomes, to hear from families and from individuals who live with disability?
What if there was equity in accessing resources and equipment for students with disabilities regardless of how they grow - and where they go to school? All school systems have the potential to carry the responsibility and the joy of caring for and supporting Ontario’s children.
I wonder if there’d be more work accomplished if the Question Period wasn’t televised. It’s been so emotionally charged lately; I end up turning it off, thankful that at least Mr. Speaker can get everyone to stop yelling. I’d like to vote for him next time.
So, yes, I’m paying attention more than ever to what’s happening in our provincial landscape as it relates to policy, decision-making, and budget. It’s a story that’s unfolding, and I am a part of you. So are you. What’s in this chapter for us?