Fighting for those with severe autism is “worth every minute of the time you devote to it.” Take your child to hearings and meetings in your state. It opens eyes and makes a difference.
White Haven in Pennsylvania may be saved from the axe due to grassroots advocacy.
By Anna Noman
Let me tell you first and foremost, disability advocacy work form the parent/caregiver angle can be b.r.u.t.a.l. Very, very brutal. On the flipside, it is also very rewarding and extremely effective. It can be done individually or as a group. It is empowering when you see results, frustrating when you experince setbacks. It is worth every minute of the time you devote to it.
I’m the mother of an autistic adult son and a fierce grass-roots advocate in my state. People ask, where do you find the time?
I find the time because our children’s lives are at stake.
Have you heard about the advocates and their families who recently spoke up in Pennsylvania and stopped the closure of two residential care centers? Their voices provided powerful testimony to legislators who in turn called for a moratorium on the closures until a complete and thorough assessment could be completed.
Have you heard about advocates in Ohio? After their disabilty rights organization was trying to force claosure of all residential centers, our advocates and families fought them in court, and won. The right to choose to reside in a residential center (which offered the needed supports) was upheld.
Have you heard that in 2018 in Washington state, a bill to eliminate 14c certificates (non-competitive employment) statewide made it completely through the House without anyone testifying against it? Then some self-advocates who actually participate in employment under the certificates and their families became aware of what was happening. They gathered together and formed a collective voice. They showed up and testified, they emailed, they called. The bill was partially blocked in the Senate thanks to these efforts.
“Take your child or adult, even if you know they may be disruptive. Without a doubt, taking our adult children with significant support needs to legislative hearings has had a positive impact.”
So what can I do, you are saying? I am juggling so many balls, one more and I drop them all. Every single one.
Well, did you know if your local legislator receives around five to eight emails on a particular subject, their ears perk up a little? If that rises to ten or fifteen, they really listen. Phone calls matter too. If you suscribe to groups that put out action alerts, pay attention. If you support what they're supporting, send an email, make a call. Find out who your local legislators are. Find out if they have town halls. Go. Take your child or adult, even if you know they may be disruptive. Without a doubt, taking our adult children with significant support needs to legislative hearings has had a positive impact on our behalf in our state.
Grass-roots advocacy can be messy and chaotic at times. Those who participate are typically volunteers. Consensus amongst a group can be difficult to acheive. More than anything, grass-roots advocacy is effective and crucial in today’s world of disabilty policy, which is unfortunately dominated by ideologues who want to remove options for the severely disabled.
So what stirs my pot, what motivates me to speak up and speak out and get involved as an advocate more than anything? Love. The deep, unabiding, unconditional love I have for my son. The desire to ensure he is provided opportunities of his choosing that enrich and enlarge his life with people he chooses to be with in the places he wants to be. There are a lot more reasons I came up with, but love is what I kept coming back to.
Anna Noman is the pseudonym of an advocate for severe autism in her state.
Editor’s note: See NCSA’s letter opposing closure of Pennsylvania developmental centers here.
