The world of disability rights lost two giants in the past year. Julie Beckett and Judy Heumann both devoted their lives to advocacy. I never had the honor of meeting these women, but my son and my family benefit from their passion and impact every single day.
Both Julie and Judy got their start in advocacy by trying to overcome an obstacle in their lives. They started small. Julie wanted to bring her daughter home from the hospital. Judy wanted to get a job as a teacher. They both ended up fighting for disability rights on the national and global levels. Neither of them set out to change the world, but they did.
Julie’s daughter, Katie Beckett, was hospitalized as an infant with many medical complications. At that time, in the 1970s, Medicaid did not allow in-home care of children who required a lot of medical support. As her daughter Katie used a ventilator, she stayed in the hospital for three years! Julie was determined to change this.
Julie got the attention of her senator who eventually got the attention of President Reagan. In 1981, the President changed the law and Katie got to go home. Many states adopted the same law, referred to as Katie Beckett Waivers (in Texas these are referred to as Medicaid Waivers).
Thirty-three years later, Julie’s advocacy touched my family in a very personal way when I got to bring my son home from the hospital with all the medical support and equipment he needed.
Judy Heumann used a wheelchair after having polio as a child. She was a good student, went to college, got a degree in teaching but couldn’t get a teaching job because schools in New York City wouldn’t hire a person using a wheelchair. Judy sued the school district and got the job.
That was just the beginning for this pioneer of disability rights. Judy played a big role in getting the Americans with Disabilities Act (ADA) made into law. Because of this, my son has the right to wheelchair ramps and sidewalk cut-outs. It means he has access to go where anyone else can go.
Until I had a child with a disability, I must admit I didn’t think much about disability rights. I had never heard of Julie Beckett or Judy Heumann. Now I can’t imagine a world without them. They were women who saw injustices and fought against them. As Judy said in her biography, “I was willing to make a fuss about it.”
As parents of children with disabilities, I think it helps to know about the way things used to be before people like Julie and Judy changed it for all of us. It can inspire us to try to change things for our families and children, too. We can follow their example of starting small. We can make a fuss. Who knows? Maybe one day we too will change the world!
Learn more about civic involvement and ways to advocate for your child.
As the parent of a child with mild Cerebral Palsy, I learned that the word “hurry” doesn’t apply to my son, Jason. With motor planning difficulties, hurrying just wasn’t something he could do. I learned to adapt and accommodate our schedule to allow extra time. However, when I found myself in the situation of caring for elderly parents & parents-in-law, and our son, I struggled to find the patience I once had with Jason.
Categories: Family Support