The Blog

Mary Evelyn at What Do You Do Dear? recalls what it was like when a little girl walked up to her son, who has spina bifida and is in a wheelchair, at church one day:

And then, without taking her eyes from his face, she said “I feel sorry for him.”

I felt it more than I heard it. Deep in my stomach, in that place right below my breastbone. The place where I keep all my fears and my sadness. I felt it like a kick in the ribs.

Children ask all sorts of question about my son.

Why is he in that? Why can’t he walk? What’s wrong with him? Will he need that thing forever?

But questions are easy. For children, questions have answers.

“I feel sorry for him” is not a question. It is a statement of fact. A revelation. A public disclosure of something I know to be true. Although I fight against it and try to believe otherwise, I know there are many many people who feel the same. Many people who see my son, smiling and spinning and exploring his world, and they feel sorry. They feel sadness. But adults know how to filter. We know what not to say. We know to bottle up. This little girl was a leak in the system.

A system that tells her my son’s wheelchair is “very sad.”

A system that tells her he is a “poor thing.”

A system that uses words like confined to, suffers from, and bound.

A system that prefers to see people like my son as victims, as recipients of charity, as less-fortunates waiting to be healed, rather than seeing them as neighbors, colleagues, teachers, and friends.

A system that tells her my son smiles “in spite of” rather than simply because he too is a child and has access to all the same earthly wonders that she does.

Wonders like fireflies, and candlelight, and going fast, and little girls in gauzy white dresses.

It’s true.

In the past nearly 15 years I’ve found that often the hardest part about living with a disability is not coming to terms with what I can’t do, but dealing with the perception that I am more helpless/miserable than I really am.

Despite the many wonderful advances we’ve made in protecting the rights of people with disabilities and including them in society, it seems we’ve yet to remedy the view of the general public that life with a disability is less enjoyable or fulfilling.

But there is hope. Read the rest of Mary’s post for a beautiful example of a stranger who gets it right!

I’ve written several of my own reflections about life in a wheelchair here. Today I thought I’d let someone else take the wheels, so to speak.

Nine-year-old Ella is the daughter of author/blogger Rebecca French. Two years ago she was diagnosed with Juvenile Rheumatoid Arthritis. This year her condition has worsened to the point she finally needed a wheelchair.

Last week, Rebecca asked Ella to to describe “what it’s like” for her readers and she allowed me to share it here with you:

My mom said I had to write this but I’m not completely sure what I am supposed to do. I think I’m supposed to write about losing the strength in my legs.

But honestly it hasn’t effected my life a whole lot. Actually I take that back. It kinda has, but not a whole lot. Honestly all that it has really done is scare my friends away. Well most of them. And it has taken away the strength in my legs and given me big biceps and put me in a wheelchair. I mean I still have a few friends and by a few I mean 1 friend but she’s my best friend and she’s been around people in wheelchairs so she’s not scared. If all my friends were gone id be bored as heck every day.

I’m not really worried about being in a wheelchair my whole life because when I get scared all I really do is remember God has a plan for me. When I remember that I’m not really scared.

Oh and the wheelchair and stuff freaks out my bird. When I try to pick him up he gives me this look like I’m the dumbest person on the planet and then he tries and tries to get away from me.

So honestly other than the birds and friends this hasn’t effected my life a whole lot. My brothers are still annoying and my baby sister still whines. I draw and read a lot and play with my best friend. I still have to do chores and get in trouble for not making my bed. Wow writing this many words is hurting my hands a lot so now I know I can’t be a writer because my hands already hurt after 314 words. Any way I don’t know what else to write.

Very well said! She has accepted this change with such grace and good humor. I am sure she will have no trouble making many new friends in no time.

What I loved most about Ella’s response to her mom’s request is how she didn’t reflect on what she can’t do anymore or has to do differently or or how much she has had to overcome. Quite the contrary!

Her thoughts actually remind me a little of something I wrote a few years ago on my “10th anniversary”.

There is a major difference in the idea able-bodied people have in their minds of what life with a disability must be like and how that life is lived in reality.

Often the prospect of life with a disability or a disabled child is seen as an act of heroism that people either think they don’t have the strength for themselves or aren’t comfortable asking someone else to undertake. Words like “burden” and “cope” are frequently used, but the reality for those of us who live it, is that life with a disability is quite ordinary. It’s sometimes challenging, to be sure. Who’s life isn’t? But it certainly isn’t too hard to handle.

That’s the thing about disabilities. Once they become our realities, most of us come to terms with it (some sooner than others), make the necessary adjustments and continue on with our otherwise “normal” lives.

I don’t think it matters how handicapped you are or how sick. You always succeed in something. God gave us each a gift. -11 year old Garvan Byrne, terminally ill and handicapped from birth

It’s easy to get so caught up in the things that a disability takes away that we lose sight of what is still possible. Thankfully, Ella does not have that problem.

Prior to her injury she was a dancer. A ballerina, to be precise. Unable to dance like she used to, Ella has not let that stifle her creativity. Instead of dancing, these days she focuses much of her creative energy on drawing. And she’s quite talented:

With her mother’s supervision, Ella recently created a website to showcase her art. Head over to Ella’s Doodles and show her some love!

Another way you can help out Ella and her family is by donating to the GoFundMe account that one of their friend’s set up to help raise money to buy Ella a good wheelchair. These suckers aren’t cheap, y’all!

Related:
Pope Benedict’s message to children with disabilities
Your Handicapped Child is a Blessing