Views from an Adult With Disabilities

The Road Ahead ...

(Cross-posted at Brielle and Me)

Kerith Stull is the mother of a teenage daughter with cerebral palsy. I started reading her blog, “Brielle & Me”, after she commented a few times on some of my blog posts. A couple of weeks ago, we started exchanging emails about doing a collaborative blog post with Kerith posing questions parents of children with disabilities might ask, and my replies as an adult who grew up with disabilities. This post is the final result. We are both posting the same article … with own own introductions … on the same day at the same time on our blogs.

Questions from Kerith, and my replies ...

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.

From Kerith…

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.

Finally…

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 Kerith Stull:

In 1995, Kerith was the married mother of a toddler working in marketing. Her life changed dramatically when her second daughter, Brielle, was born affected by CMV (cytomegalovirus). She quit her career and became a stay-at-home mother when Brielle was six months old to focus her time and attention to Brielle's needs. Brielle is now a highschooler and doing well despite CMV. She has CP (cerebral palsy), walks with a limp, and has an impaired right arm and hand. She needs assistance with basic care needs including dressing, bathing, and toileting. Brielle does not have any hearing loss (usually very common for CMV), but she cannot speak due to the CP. Instead, she uses sign language and occasionally uses a communication app on her iPod to communicate when I am not with her to interpret. She functions academically at about a fourth grade level for everything except math, which lags behind. Brielle participates in a work study program at school and loves her “jobs” at CVS and Walgreens. She  bowls in the winter with Special Olympics, plays baseball in the fall and spring on a Miracle League team, and plays soccer on a special needs team with TOPSoccer. She spends her free time dancing with teen idol bands on her iPod, doodling in a notebook, or watching teen shows or Scooby Doo. She has an infectious squeal and a smile that can light up a room.

“Brielle and Me" is a peek into their lives with their special needs daughter – the good, the bad, and the sometimes surprising. The stories Kerith shares here are motivated by a deeper passion — the pursuit of meaning from something that could be seen as so meaningless. Kerith's book about her journey of hope, determination, faith, and love was published in February of 2014.

What questions do YOU have for Kerith?