1. I embrace my disability. While it is true that if I had been given a choice at birth, this is not the life I would have chosen, for the most part, I feel blessed by my circumstances. It is only because I am a wheelchair user that I have been to do some of the amazing things I have. As Ms. Wheelchair Kansas 2007, I got the opportunity to travel the state and talk to various groups about disability issues and ways to empower people with disabilities. Because of that title, I also had a personal meeting with the governor. In addition, I have provided testimony to senators and representatives at the state capital about programs that would improve the lives of people with disabilities by enabling them to work without the risk of losing state funded attendant care. And along with that, I had the honor of being part of the statewide committee that moved the idea of that program into reality. None of that could have happened if I had the ability to jump rope. It seems like a fair trade-off to me.
2. I want to be empowered, not pitied. So many people in my adult life have said that they did not know what they would do if they were in my situation. But I don’t have kids, or a stressful job or a car that breaks down continually. I don’t know what I would do in those situations because they are outside the realm of my experience. There is no reason to feel sorry for me. I am not less fortunate than other people. All of us play the hand that we have been dealt the best that we can, whatever the situation.
How do I ask that people empower me? Focus on what I can do instead of what I can’t. Notice my smile and be willing to start a conversation, in whatever way you feel comfortable, in the same manner, that you would with anyone else.
3. I can communicate my needs and any information you want to know about me by myself. There is no need to ask my caregiver or anyone else questions about me. Even if you are uncomfortable or have never communicated with someone with a disability before. I won’t judge you. But please don’t ignore me and pretend I am not in the room. I can help you with your discomfort if you can respect me enough to let me know about it. We can work together. And I want to do that. But that is not going to happen if I am not given the opportunity to communicate with you directly.
4. I want to help you. Yes, it is true that I need a lot of assistance in my life. Some days I have trouble getting out of bed by myself and I am still trying to perfect the process of putting on my own shoes. But please don’t see me solely as someone who needs to be helped. There are many things that I have to offer, and I wish people could see me as someone who can assist them. It is difficult to be on the receiving end of generosity or support all the time. I know I can never repay people for all they do for me. If that were the case, I would never catch up. But I am capable of giving support as well. I know about things that many people in the general public don’t, and I am happy to share that information if people need it. Do you know the best places to advertise for caregivers, or the most accessible places in downtown Lawrence, KS or how to navigate your way through applying for government benefits? Do you need a listening ear without judgement? Give me a call. See #2.
5. Although I try not to focus on the physical limitations of my disability much, (It takes about 12 moves for me to get out of bed in the morning, but that usually is not on my mind as I go through the process) there is one part of my life that causes more frustration than anything else. Because I don’t drive, I am somewhat isolated, and that makes connecting with people challenging.
If you are out and about, call me and check if it’s okay if you stop by and say hi for ten minutes. Or call me at the end of your day. Or let’s schedule a time you can come over for some iced tea. I will not ask you to do the dishes in the sink or rotate my laundry while you are here. Too busy during the day? You don’t live close by? That’s okay. Can we Skype every once in a while or communicate on a regular basis by email or text? Connection is important to me; in whatever way we can make that happen.
Those are the things I wish people knew. But I tell you what. If you get to know me, they are pretty easy to figure out.
Sometimes wishes become reality…I like that.