I'm an Adult With a Disability: Here's Why I'm Optimistic About Kids With Disabilities Today
As an adult with a disability, I'm here to tell you a good life for people with disabilities is more than wishful thinking.
This isn't a profile of three inspirational children with disabilities. I'm not going to tell three heartwarming stories about classmates, bus drivers, or strangers in a supermarket being kind to children with disabilities and their parents.
I'm not a doctor, therapist, or teacher. I don't have kids. But as a former child with a disability and now an adult with a disability involved in disability culture and activism, I want to share three observations that taken together are real, solid reasons to be optimistic if you’re a parent raising a child with a disability.
Kids with disabilities are not alone
One of the earliest sensations of being a child with a disability is feeling like you're "the only one." For some of us, that alone feeling lasts well into adulthood. But it's an illusion. We are far from alone.
The latest figures from the U.S. Census Bureau indicate there are about 40.7 million adults with disabilities in the United States. And 20.9 million of us have mobility impairments; 15.4 million have cognitive disabilities; 11.5 million are deaf or hearing impaired; 7.5 million are blind or visually impaired. There are also 2.8 million children with disabilities.
And there's no shortage of peers, mentors, and allies for children and youth with disabilities. It also means that our needs aren't so "special" after all. In fact, they are pretty common. So, it's also entirely reasonable for us to expect a free and equal place in society.
Independence really is for everyone
Some parents of kids with disabilities look at adults with a disability and the ambitious goals we champion, and wonder, "But what about my child?"
How can a child who can't walk or feed themselves ever hope to live a typical adult life? How can a child who can't speak or dress themselves, or who can't manage simple finances ever get married, get a job, or even go to the store on their own?
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But people with these disabilities and many others actually do all of these things, and more. The point is that the type of one’s disability does not determine their potential for independence and happiness.
One of the pioneers of the disability rights movement, Judy Heumann, explains it best when she says, "Independent living is not doing things by yourself, it is being in control of how things are done." Her quote underscores a key concept for people with disabilities.
Real independence is about being your own person, living life on your own terms, not about complete self-sufficiency. Independence isn't about doing everything for yourself, the same way everyone else does. With the right tools and support, and adapting the usual ways of doing things, people with any kind of disability can achieve meaningful independence, whatever it may look like for that given person.
This is also one reason why the disability community is becoming more diverse. We are less segmented into our own disability categories. Our goals and principles are steadily converging. At the same time, this movement that has historically been dominated by white, well-off men in wheelchairs, increasingly includes people of color, women, and people from a much wider variety of other ethnicities, faiths, philosophies, income levels, educational backgrounds—and different types of disabilities. Slowly, sometimes painfully, we are becoming a true "Disability Community."
People with disabilities are fighting ableism, and we are winning
Viewed up close, ableism is everywhere. Children with disabilities are still teased and bullied. Many businesses remain inaccessible. There are employers that still screen out applicants with disabilities. And agencies and offices meant to serve us, just as often get in our way. Life with a disability isn't easy, and our disabilities themselves aren't even half of our problems.
But take a few steps back and look at where the community stands today. It's hard to deny the incredible progress we've made.
Institutionalization used to be standard, especially for children with developmental disabilities. Now it is relatively rare. The impulse to protect, confine, and regulate people with disabilities is still strong, and sometimes surges in response to horrifying events or individual tragedies. But laws and policies put forward by people with disabilities continue to power a long-term trend towards individual services, community inclusion, and freedom.
The Americans with Disabilities Act (ADA), which aims to prohibit discrimination against people with a disability, isn't perfect. Too often it's not taken seriously. But 29 years ago when it was signed into law, the ADA transformed the way society approaches accessibility and disability discrimination—shifting from charity and benevolence, to civil rights and respect. And while barriers persist, our communities are far more accessible than they were 30 years ago.
In 2017, activists with disabilities like Ady Barkan, and disability organizations like Little Lobbyists and ADAPT played a pivotal role in preserving important gains and protections in health care—for people with disabilities and for everyone else.
The disability rights movement, led by people with all different kinds of disabilities, is the driving force behind all of these historic gains, and we are fighting for others right now:
- Ending sub-minimum wage, so people with disabilities are paid fairly for their labor.
- Making community-based home care a right so nobody has to live in a nursing home or institution.
- Fixing disincentives in medical and financial benefits that hold so many of us back from working, saving, and getting married.
All of these trends mean that the good life for people with disabilities is more than wishful thinking. It's a realistic goal for people with any kind of disability, at every stage of life, in every possible situation.
These are powerful reasons for optimism.
To connect with the broader disability community, contact your nearest Center for Independent Living, nonprofit organizations run by and for people with disabilities in every state and U.S. territory.
Andrew Pulrang is a disability blogger, co-coordinator of the #CripTheVote Twitter campaign, and worked for 22 years at a Center for Independent Living serving people with disabilities.