The Power of a Caregiver

Last week, 45 FASD reps from across the province came together with one voice and met with over 30 MPP’s. When you consider that FASD has never had an advocacy day at Queen’s Park before and there has never been event where FASD reps from all parts of the province were physically together before, this could be considered a historical event. When you add in the factor that Kids Brain Health Network timed Dr. Popova’s report release with this event and created a lot of media attention, this could certainly be considered a rousing success.

The assumption going into this event was the focus needed to be on education. There were only seven MPP’s who spoke toward the FASD motion last December so we assumed the 25 MPP’s who joined us were starting to learn about FASD. It was very clear MPP Anderson of Durham, MPP Kiwala of Kingston, MPP Clark of Leeds-Grenville and Minister McMahon of Halton are very well informed. It was also clear we have currently managed not to be a partisan issue. MPP’s from all three parties came to learn about FASD and have consistently voted in favour of our motions. In the history of Ontario, only four pieces of FASD legislature have been passed.

- Sandy’s Law, back in 2004,
- the MCYS initiatives, last year
- Sept 9 as FASD Awareness Day, last year
- Bill 191 and now Bill 44, this year

What they all have in common is they were the results of caregivers speaking up. Caregivers, who are trying to support their children today, have the most powerful and loudest voice of all. While the majority of FASD reps present April 11 would be considered service providers or researchers, they are limited in their advocacy because of political considerations. As a caregiver, I’ll talk to anyone at Queen’s Park willing to listen.

I was at a writer’s workshop recently and was reminded of five important facts about writing by Managing Editor of Faith Today, Karen Stiller. I share this with you because writing and advocacy go hand in hand.

1) It is hard and discouraging.
2) You must have a passion in your belly to keep going.
3) Tell the truth. Don’t dance around it, don’t be ashamed, own it and be genuine.
4) Build a supporting community around you and hold onto them at all cost.
5) Be a risk-taker. Ask yourself why am I afraid?

It is these five facts that make you the ideal advocate. When you persevere, when it is not a job but a life, when you are genuine and not coming with an agenda, when we come together as one voice, and we show courage, people respond to that. What do we have to lose? We have nothing now and nowhere to go but up. We have heard so many times from so many people “No!” that personally it doesn’t even affect me anymore? My three children, who really struggle speaking to people they don’t know, sat in a room with 75 strangers for two hours, controlled their anxiety and then found it within themselves to share their stories with MPP Taylor afterwards. They then sat quietly in the gallery as they watched Bill 44 pass first reading. If they can do it, I most certainly can do it.

I know what my next four objectives are.

First, I am taking on the CRA, Minister Morneau and this Disability Tax Credit mess. How all three of my children don’t meet their definition of disabled is insane. I have now taken it to the appeal level and preparing for tax court. If you are not aware, the CRA is currently rejecting 70% of applicants who have been identified as disabled by Disability Support Programs. I reached out to Lisa Raitt, Deputy Leader of the Opposition who responded positively and now starting the conversation with her about this.
Second, I will be the first one up asking a question at my local All Candidates debate in May because
local media always publishes the first two questions. My question will be along the lines of “Our current government for the first time ever budgeted money for the 90,000 children impacted by Fetal Alcohol Spectrum Disorder this year which is the most prevalent neurodisability in Ontario and twice as prevalent as autism. If you formed the next government, what would you do to ensure individuals
impacted by FASD are properly supported?”
Third, I will continue to network locally, spread the word and ensure our local Key Worker has what they need to successfully support our community.
Lastly, as Doug Ford is making his way around the province, we keep talking to Simone about FASD.
Simone is part of his campaign team as the main policy advisor. She is in her late 20’s, long black hair, and will be hanging around in the back with 3-4 other young men. She has been told about FASD four times in the last three days. If you are going to a Doug Ford event is in your area, have a conversation with Simone.

I reach out to you again, my fellow caregivers. I heard it repeated on Wednesday that autism advocacy started 15 years ago with a few caregivers having rallies on the front lawn of Queen’s Park. We as caregivers need to lead the charge. MPP’s will work with us if we keep reaching out to them. Service providers respond to us when we provide the clients for them. Researchers reach out to us when they know we will volunteer. Media like us because we create political news and the heart-warming stories of courage, grit and honesty. Don’t forget, you have the greatest degree of all, “Caregiver with lived experience!” What else needs to be said?