The Squeeky Wheelchair

This post makes so proud to be part of such an awesome family.  I grew up as the oldest of 13 cousins on my mother's side and 11 out of 13 of us are girls.  We are a group of loud, crazy and opinionated blondes. One VERY opinionated blonde is my cousin, Kathleen, who was born with cerebral palsy as well as a gift for the written word.  I asked her to write a post for me because Kathleen is the author of the blog titled "The Squeeky Wheelchair" and discusses, with incredible wit and humor, issues concerning the public and those with "disabilities."  In this post, Kathleen talks her about her quest in life to be of service to others and how she deals with the bumps along the road…   

All 13 cousins with Kathleen, front row center and myself, front row right.

Since I was born with cerebral palsy, I have been helped and taken care of for all of my life. People are used to

me needing help, and often people with disabilities are portrayed exclusively in the context of how they need to be assisted. More often than not, we are placed on the receiving end of volunteerism and giving. As I grew older, I realized that I too wanted to give to others, an idea that in the eyes of society is a strange role reversal. While I appreciate all the assistance that is given to me on a daily basis, it is frustrating to be viewed by others as someone who is always to be helped and never to do the helping. It is this attitude I believe that often leads to the exclusion of people with disabilities from organizations and systems that affect them… so many entities exist “about” us and  “for us” but how often does society highlight a person who has a disability’s capability to do, give, or be and not merely to receive others’ good? 

Kathleen Downes

I have known from an early age that I want to help people. Perhaps this comes from my experiences with all those who have helped me. Perhaps it’s just a part of my personality. I think it’s a little of both. Even though I use a wheelchair full-time and need a personal care assistant to even get out of my bed, I believe and always will believe that everyone can serve others. 

Kathleen and her twin sister, Claire

My quest to do just that has sometimes been met with uncertainty, skepticism, or flat out narrow-mindedness. When I pursue a volunteer or service opportunity, I still feel nervous sometimes to what I jokingly call “drop the bomb” because unfortunately, some people assume that a person like me can only be helped. The tone of surprise when I want to give something to the community rather than receive it is often downright frustrating. I’ve been politely told that “it would take a while to find something for you to do” due to the practice of summing up one’s ability to be of service based on how much she can move or use her hands.

 Sadly, I have even encountered this at organizations that do disability-related work, whose staff seem somewhat flummoxed at the thought of someone with a disability doing work that affects her rather than letting decisions be made about her demographic. If such people were thinking clearly, they would realize that hiring a disabled person in the disability services realm is simply increasing the expertise within the organization. 

Kathleen and her two sisters, Claire and Maggie

Despite the frustrations I’ve encountered, I still pursue my dream of going into the service professions. I want to have a career in disability services or social work, and to show other people that I belong on both the giving and receiving end of the world’s good, just like everyone else. Finding a role for me is sometimes more challenging given my physical impairments, but finding a meaningful role for me, and for anyone like me is not only possible, but worthwhile. It just takes some creativity, a property already essential to any great organization. 

I am fortunate that I have enjoyed a regular volunteer job at school, working at a childcare facility for kids in crisis. The skeptics out there would ask what I can do for children. I’m not strong enough to lift a child or even to change a diaper. But if that’s what society thinks loving a child is about, then our children have a bleak future ahead of them. I may not be able to lift them, but I can still talk to them, play with them, and teach them. I hope my presence is a lesson to them that everyone can give something. However, based on the extraordinary love they have shown me, I do not think children are the ones who need to be taught. Instead, I hope when they grow up, they will join a generation that knows everyone can serve. I am extremely grateful for the inclusivity extended to me at the nursery, and I hope one day, all entities will have the same attitude. 

Kathleen and our cousin, Cara at an Illinois/Michigan Game

We’re used to seeing the calls “to help people with disabilities”, to “do service for people with disabilities”, most of which are amazing, wonderful calls. But we want to help too. I refuse to accept that we can only exist in the context of those who are helped. Everyone can, and everyone should do something to better the community, because each of us is a part of it. To assume I am merely a person for whom life can be bettered is a terrible mistake.

For more visit: The Squeeky Wheelchair