Growing a Tree

"Someone's sitting in the shade today because someone planted a tree a long time ago."

What to Do?

So now that I’ve dipped my toes into advocacy, I’m seeing some things that shouldn’t surprise me but they do.

What to do with parents of children with disabilities who don’t believe, don’t care, or are too afraid to believe?

Last spring, my husband and I attended a town hall meeting with our state legislators in regard to the state budget. There were major cuts to programs that are important to people with disabilities (for instance, city buses to get to and from work) as well as an almost $1 billion dollar cut to public education. We testified how the cuts would affect our daughter specifically.

Another mom testified about her child. This child also has a disability. She said the state was spending too much money on his education, on his transportation, on his health care. She claimed to be the first parent to ever sue the state for the right to place her child in an institution to “save the state money.” She won, and her child currently lives in an institution.

Now, as a mother to a child with a disability, I’d like to believe that there is so much more at play in her story than she let on. I would like to believe that she was afraid, that she felt unsupported, that she was at her wit’s end. I would like to believe that the financial component of her story is really just a cover. (Actually, I really hope it’s a cover because there are virtually no scenarios in which paying for someone to live in an institution is cheaper than in-home care and support. I’d hate to think there is a child in an institution based solely on some bad math.)

This is an extreme example, but there are other, more insidious examples that I encounter more often than I’d like to.

It’s the mom who says “My kid will never…” and the dad who tells me “You’re naive to think…” It’s the person who told me that my generation “doesn’t have to fight” for anything anymore because my child wasn’t put in an institution. Well, there’s a standard for you. “Not in an institution.”  (Calmly walking away from that particular conversation was an exercise in extreme willpower.) The people raising the next generation of individuals with disabilities are throwing up the very roadblocks that anger and frustrate them.

How do I write a legislator asking for a change in policy when there is another mom saying it isn’t necessary or that it’s too costly? How do I ask for fully inclusive education when there is a dad demanding a specialized school for his child’s diagnosis?

What do I say to someone who says there are no more fights when I’m staring down a system that patronizes people with disabilities by “doing for” instead of supporting, breaks the law by segregating kids in special education, and creates dependency on the system with stringent Medicaid laws and sub-minimum wages? (Yes, it is legal to pay a personal in a sheltered workshop sub-minimum wage – we are talking literally pennies a day here.)

Where do you strike the balance between respecting everyone’s viewpoint, making sure all voices are heard, and still creating positive, meaningful change for all?


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