Back to work, Fertman
Taking action against a malevolent government
I’m thinking about the days after Oscar was born. The growing sense of urgency as it became clear that he was deaf, and that we had only a short time to act. We hit the books, turned up research, spoke with Deaf adults, and made decisions about what we would do, and what we wanted from the professionals sent to help us.
This was followed by the sinking realization that the pros, from the school district on down, were stonewalling. Some did not know their ass from a hole in the ground. Others had specific ideas about what was supposed to happen with Oscar, whether we wanted it or not. Some seemed helpless in the face of their more assertive colleagues. None of them were going to just allow us to give our child the education and the services that were his right under the law.
This was a terrifying experience, with Body Snatchers overtones. We could no longer rely on the competence and benevolence of the systems around us, and we could no longer trust the people put in charge of our child’s well-being. We were suddenly done to, rather than done for.
From a distance, the amount of privilege we lost was small. But it’s completely disorienting after a lifetime of easy access to arrive at a meeting and realize that you’re not on the inside anymore. There are plans in action, plans that you had no part in, that are a disaster for your child and your family.
This can shock you into immobility. And if you stay still for too long, you can miss your chance to act. I’ve seen other parents, especially white and well-off parents like me, utterly derailed by the experience and become passive. They end up drifting in the directions they’re pushed, sometimes for years, directions that don’t help their children and ultimately undermine their family.
Pushing back first meant saying no. We had an easier time than some because we were both from Boston, so we were No People, and we left the meeting asking each other what the fuck just happened. And saying it to ourselves was the first step, necessary but not sufficient.
The next one was saying no to the people in power. That took more courage, so we found encouragement at our local deaf services agency. Families alone do not have the resources for these fights, but organizations do. There are networks knowledgeable lawyers, activists, fellow parents and Deaf adults out there who have the tools to fight back.
And in talking with those people, we found the methods, the language, and the venues to fight. And because they fought for us and showed up to our meetings, we found time to fight for them, and show up for their meetings. And it turns out, those scary administrators, politicians and professionals are mostly pushovers. Many hands make light work; shove them hard enough in one direction and they’ll fall.
This wasn’t always comfortable and it wasn’t always nice. But birth isn’t nice or comfortable, and neither are 2 a.m. feedings, bathtime struggle sessions, trips to the ER, horsey rides, or ASL night classes.
Let’s get to work.
Homework 1: oppose HR 899 and save the Department of Education
The Trump administration has made it very clear that destroying disability rights are a top priority. This morning, House Resolution 899 was introduced into Congress that would abolish the Department of Education. Without the DOE, IDEA cannot be enforced. States will be free to play havoc with deaf education and violators will face no penalties, so your child’s IEP won’t be worth the paper it’s printed on.
On top of this, Trump is rumored to be considering an illegal executive order closing the DOE. Fortunately, Trump is not a king, and cannot declare the DOE abolished. It would take vote from 60% of congress to eliminate it. Republicans hold a tiny, 3-seat majority. This means that you can contact your rep right now stop this in its tracks by contacting your congressperson:
https://www.house.gov/representatives/find-your-representative
Tell them, “Oppose H.R. 899, which would abolish the Department of Education. My kid depends on the protections that the DOE provides via IDEA. This is not how we protect our children.”
I’ll send a separate email about this, but pass it on to everyone you know who cares about kids, deaf and otherwise.
Homework 2: making lists, getting on lists
You will need to join the organizations pushing back against this bigotry.
Be in contact with all parents of deaf children in your area. If you have a list from your kid’s school, great. If those lists exist in the hands of others, get on them. We will need folks in all 50 states, working together.
If you have a list from your PTA, or from an org like Hands & Voices, great, but note that there are restrictions in the ways nonprofits can organize and advocate for legal issues. Still, getting on those lists will allow you to meet the people dedicated to deaf children’s rights and go from there.
The National Association of the Deaf will bring the lawyers for federal cases. Get a membership and send them money. Look up your state-wide chapter, too.
Contact your local Deaf services agency, like DCARA. Learn more about local actions and give them money, too.
I’ll have more kid’s book reviews and essays on anarchism and whatever in the next newsletter letter. But for now, contact your congressperson.
<small>This is an informational newsletter on raising a deaf kid. All opinions in linked articles are the views and copyright of their respective authors, not this guy. All original content is ©2024, William Fertman. Links are not endorsements.</small>