The Road Ahead…
One of the things I always hoped for was someone who was a few steps ahead of me on this journey parenting a special needs child. I really only had one friend with a child a few years older than Brielle. Although she was helpful, I really wanted to know more about the road ahead.
Here’s a great opportunity to learn from an adult with disabilities! Andrew Pulrang was born in 1967 and has Arthrogryposis. He’s led a very productive life and currently writes a fascinating blog at “Disability Thinking.”. (You can read his full bio at the bottom of this post.)
The Things I Wanted to Know
When did you first realize you were different?
I don’t remember a moment when I realized I was different. When I reached puberty, I assumed dating and relationships were like athletics for me, something I could observe and know about, but not participate in. I was wrong, of course. At the time, though it seemed like the ironclad truth and it was the first time I felt bad about being disabled. Eventually, when I was a young adult and discovered the disability rights movement and disability culture, I started to realize that having disabilities isn’t just about being “limited” by my body. It was also part of my social identity, something interesting and energizing. I am still learning what it means to be disabled.
What good things did your parents do for you? (regarding your disability)
My parents drew a very firm distinction between “me” and “my disabilities”. They emphasized my mind and downplayed physical things. That helped me avoid feelings of regret about not being a big, strong, athletic guy in my youth. My parents never got involved in any disability organizations. Although I am now an active participant in the disability community, when I was younger, not being connected to that community actually encouraged me to develop more diverse interests. Above all, my parents always made it clear that I would graduate from high school and then go to a four-year college away from home. This boosted my confidence and gave me a concrete goal for the first part of my life. After that, they let me find my own way.
What do you wish more parents would do for their disabled children?
- Parents need to discuss the usual topics with their teenagers with disabilities so they understand the biology of sex, consent, and personal values. They also need to know that they are beautiful, handsome, charismatic, and desirable. Some disabled youth (and maybe you) will have hard time believing it, but they need to hear that this isn’t just wishful thinking. Romantic relationships can be part of their lives. (I highly recommend reading, “Dear 16-year-old Stella” by Australian comedian / broadcaster, Stella Young.)
- Introduce your disabled child to adults who have disabilities. It doesn’t matter much if they have the same disability. The important thing is for your child to have the opportunity to look up to an adult who experiences disability in ways your child will recognize, and to see that happy, successful adulthood with disabilities is possible and common. (A great place to find appropriate adult mentors who have disabilities is at your local Center for Independent Living.)
- A really good friend can be a life-saver for parents of disabled kids. On at least two occasions, close friends furnished my mother with a very loving kick in the backside when she was seriously stuck over some aspect of my disabilities. On both occasions, these friends told her unvarnished truths she needed to hear, and that helped her, and by extension me.
What can the general public do/say to help people with disabilities?
– Don’t dismiss us, but don’t put us on a pedestal, either. Remember that we are human beings with our own will and agency. We are not symbols, metaphors, tests, or object lessons to make you a better person.
– Trust that we know what we are talking about. Like anyone, we sometimes misunderstand things, deceive ourselves, or just get things wrong. But, in general, we are usually more on top of things than you might think and we certainly know about our own experiences better than anyone else.
– Don’t support disability groups that:
- are not led, at least in part, by disabled people.
- use fear or pity to gain support.
- provide their services in segregated environments, removed and sheltered from the community.
– Support public policies and practices that increase physical accessibility, community integration, and meaningful self-direction for people with all types and degrees of disability.
So, parents. What do you think? Anything surprising here?
Notice what’s not here. He didn’t mention therapy, IEPs, or equipment – things we parents focus so much of energy on in those early years. I’m sure he would say they were and are important. But, as the child ages, the focus really shifts – or at least from what he’s shared here, it should.
What can we learn?
- Your child’s disability is part of their identity. However…
- Focus on your child, not your child’s disabilities.
- Encourage diverse and individual interests.
- Have high expectations.
- Encourage independence and independent choices.
- Talk to your child about the tough stuff, especially sexuality.
- Provide interactions and role models who have disabilities.
- Make sure you have a good friend.
- Respect people with disabilities.
- Give your support to disability groups and public policies that truly include people with disabilities.
Although we parents of special needs children have so much to think about and do for our little ones, be sure you’re looking ahead and preparing your child for the disabled adult they will eventually become.
More about Andrew Pulrang: Andrew graduated from Dartmouth College in 1989 with a major in History. Literally not knowing what to do next, he enrolled in a Master’s Degree program in Rhetoric and Communication Studies at the University of Virginia. After always avoiding involvement in disability issues, he ended up doing his Master’s Thesis comparing depictions of disability in television and movies. During the summer between his two years at UVA, he did an internship at the North Country Center for Independence, a Center for Independent Living in Plattsburgh, which had just started about a year before. Finding a disability organization that wasn’t begging for medical research funds with sad pictures of disabled kids was a revelation to him. He stuck with the Center, and the Center eventually stuck with him, as he became the Executive Director in 1998. He continued in that position until he stepped down in 2012. He still does some work with the good people at the North Country Center for Independence, doing some consultant grant-writing. But, he needed a real rest, and he also wanted to explore disability issues in a different way. His blog, “Disability Thinking“, is the result.
What Questions do YOU have for Andrew?