I spent last weekend cleaning the basement.
Sounds fun, I know!
Rearranging and archiving multiple banker’s boxes full of old IEPs, due process complaints, assessments, evaluations, etc. Also found myself flipping through the dog-eared pages of the half-dozen-or-so IEP and special education self-advocacy books I had purchased in the years before my daughter was identified for special education. I had notes in the margins, highlighted certain sections, written in names of advocacy groups and attorneys, but the thing that stood out the most to me were the sales pitches on the front covers: “Advocate For Your Child” and “Fight For Your Child’s Rights!” I paused for a moment and asked myself, “why do parents of disabled children have to fight, why do they have to advocate?”
Even if you are “fighting the good fight,” a fight implies little in the way of comfort or community building. Why must it be a fight? Why must parents of disabled children undergo some sort of metamorphosis into an advocate? All parents experience some form of emotional change as they learn to care for, and support, their child. But many parents of abled children never find themselves fighting for their child’s rights or in the role of a full-throated advocate. And a fight by definition must include winners and losers.
The wheelchair ramps, blue parking stalls, and Braille that feels ubiquitous and common sense now, once wasn’t so. Those meaningful and basic accommodations didn’t come without a fight, legal quarrels, advocacy and allies. In retrospect, we can ask ourselves, “who would resist accommodating someone with a disability? Who would demonize and marginalize a community? What kind of interests are aligned against granting someone access to a world that isn’t built for them?” But there was then, as there is now, people in positions of power who have an interest in maintaining the status quo. And the motivation is usually financial.
Most parents fighting to get their children enrolled in special education or advocating for appropriate accommodations do not have a child with a visually perceptible disability (i.e. there is no wheelchair in autism, there are no guide dogs for the child with ADHD or a learning disability). Parents can’t crawl up the Capitol steps as did those brave physically disabled citizens in 1990 when the Americans with Disabilities Act was stalling in congress.
Parents of disabled children have to fight an invisible fight. A fight that often casts them as an abuser of a system build for people who aren’t motivated enough to do for themselves what everyone else can do. There is often a fine line parents find themselves perpetually falling off of. Pushed harder and harder to highlight all of the negative or detrimental aspects of their child just to obtain equal access, yet at the same time holding the emotional strength to see and cultivate their child’s humanity.
The parent of a disabled child’s superpower is rooted in the notion that they are simultaneously a tough as nails/take no BS advocate for their child, but also completely open and vulnerable for their fellow parents.
As we finally begin to hear more #actuallyautistic voices in the media and public spaces, we must also carry the capacity to understand that even if our intentions were good, our actions may be hurtful to the one’s we are desperately fighting for to have access to this world.
I immediately found a new home for my advocacy books; which I found very sad. Well over a decade later, little has changed. The fighting continues; parents locking horns with school districts dead set on cost containment through a discriminatory process... But just as those who once felt unheard and excluded because of their physical disability, I am heartened to see communities of parents and individuals who needlessly suffered under the weight of unsupportive institutions form. Together change is possible, and while we may all be fighting our own individual battles, we are all starting to see that we are fighting for each other.
Thanks for joining me on this journey. I look forward to being your ally.