a good life

Here is Senator Tammy Duckworth, who I just heard speak at Jewish Disabilities Advocacy Day in DC this past week. Of all the speakers from the House and Senate who addressed the two hundred assembled self-advocates, professionals and family members, her presence was the most electrifying..

Duckworth became a commissioned officer in the Army Reserve and chose to fly helicopters because it was one of the few combat jobs open to women. She was working towards a Ph.D. in political science when she was deployed to Iraq. She lost her right leg near the hip and her left leg below the knee when the  helicopter she was co-piloting was hit by a rocket-propelled grenade fired by Iraqi insurgents. She earned a purple heart for her bravery and service.

As Duckworth told us she was given everything she needed to succeed - all the therapy and state of the art equipment, including multiple expensive wheelchairs for different uses - because she was a wounded warrior and decorated vet. It's short-sighted to give up on those of us who need supports, she explained, and in fact it's cheaper to supplement equipment, training or a caregiver to help someone to be more successful.

And she's the epitome of success. Duckworth was the first disabled woman to be elected to Congress, and the second Asian-American woman serving in the U.S. Senate. She's also the first Senator to be pregnant while in office. Someday she could become our first female, Asian-American, disabled Vice-President. (She was born in Thailand, so she cannot be President.)

Everyone needs to be seen for who they are, not for their disability, she said in conclusion, as she encouraged us to continue advocating for ourselves and our families. And then she left to the sound of our applause, rolling out of the room in the wheelchair that enables her to be another strong, outspoken woman in public life. 

This is my 17 year old son V at his job training internship at Green Visions, a program that provides students and adults with developmental disabilities the opportunity to work and earn through recycling electronics. It's a perfect fit for his spatial and mechanical skills and his delight in disassembling anything he can get his hands on. I used to call him my little deconstructivist because he would take apart every school art project, as well as remote controls and small appliances. How wonderful to see a way to put that compunction to good use!

This photo gives me a thrill equal to that of Senator Duckworth. My son will never run for public office, go to college, do anything that you would consider heroic. But he is in his own quiet way a hero. He works so hard to make progress and overcome a wide range of neurological and communications challenges. He remains joyful, determined, and increasingly self-assured as he finds a sense of agency and increased autonomy. 

There are two words I return to when I think of his future: hopeful and terrified. Hopeful because as I’ve learned since his diagnosis 15 years ago, neuroplasticity of the brain does not have a time limit; during adolescence and adulthood, the brain continues to display capacity to adapt to an ever changing environment, showing both functional and structural changes throughout a person's lifespan. I see through his progress that there is no expiration date for positive growth. But to leverage that capacity requires individualized education, therapy, and training techniques. There is a video that accompanies this photo showing a job coach and teaching aide helping V to stay on task, to complete one step before going to the next, in order to succeed in this job. I see him making progress in so many ways. With the right supports, he most definitely is capable of leading  a productive, fulfilling, good life.

Which is why I am terrified.  When Congress first passed IDEA (Individuals with Disabilities Education Act) over 40 years ago, the federal government promised to pay 40 percent of the cost of educating students with disabilities. In fact they've never even come close, currently paying only 16%, and leaving the rest to school districts and states.

This leaves millions of students in a precarious position, subject to municipal budget deficits and local measures to de-fund needed services, especially in poorer districts and more austere states. The US Department of Education just completed an investigation finding that Texas actually incentivized school districts to deny services to eligible students. 

And things will only get worse in five years, with the sudden elimination of educational options when V turns 21,  a descent so dramatic that parents and caregivers call it "falling off the cliff."  We will soon have more intellectually and developmentally disabled adults than at any time in our history, and we are nowhere close to having enough services for them.  

The new tax bill will make a horrible situation even worse, given that the tax cuts to the wealthy that are the heart (and heartlessness) of the bill create enormous pressure to slash federal programs like Medicaid, including home and community-based waiver services, and other programs that allow people with disabilities to lead healthy, satisfying lives..

While many other people my age are planning for retirement, looking forward to the freedom to travel and enjoy life, we research other countries with lower costs of living, other states with better services (although that’s always subject to change), and we identify existing good programs for adults with developmental and cognitive disabilities in order to add our names to waiting lists that stretch five years or longer, a consequence of the growing number of disabled adults desperately in need of services.

None of us knows what the future holds – it’s likely disability, addiction, mental illness, and ongoing major health needs will touch all of us in some way. The fact is we're all in this together. Let's start acting that way, and fighting for a future where we all can flourish.