Hotel rooms often have mirrors in the oddest of places. At home we have a mirror in the bathroom and one in the hallway by the door. Gotta see to brush your teeth, gotta check to see that beauty is blazing before heading outdoors. I check the mirror maybe, maybe, twice a day on work days, not at all on weekends.
We are in Montreal at a hotel on the start of a 5 day mini-vacation. We arrived later than we thought we would - construction increased our travel time by hours. I was tired after a busy day and decided to stay in while Joe headed out to have a beer in a local bar. I checked emails, answered all the work ones, wrote a couple personal ones, checked the stats on the blog, read the comments ... and that was it. I got up out of my wheelchair to go to bed and my housecoat flapped open. There imbedded in cellulite was an imprint, on either side of my body, of the wheelchair arms. I looked at it fascinated. You could see the armrests, the metal curves of the side and the space under the armrest before the protective cover. Wow.
Since I was alone in the room, I shrugged off the housecoat and twirled around looking at the various places on my body that were imprinted with chair. I thought it funny. I heard Joe's key in the door so I quickly put the housecoat back on and sat on the side of the bed giggling.
Later I thought about the imprint the wheelchair has had on my life. It hasn't left a mark on my career or my relationship with Joe ... it has barely made a mark on my friendships or my collegial relationships. It hasn't made the difference I thought it would.
What has been imprinted, very much so, has been my understanding of the social world. There is both incredible generosity and incredible hostility directed at me because of the chair. In equal meassure. Little acts of kindness by strangers, kindness unecumbered by pity, leave me often touched to the point of tears. But little acts of barbarism can leave me breathless with fear and anxiety.
I had begun doing the teasing and bullying workshop for people with intellectual disabilities a year before becoming disabled myself. I loved doing the workshop and was impressed at discovering a steel backbone in many with intellectual disabilities. I heard stories that would curl your toes but I also heard of the incredible determination to make community home. To not give up lost ground. I stood in awe of those who faced daily slurs and continued on, understanding beyond expectations that they were making a difference. I also stood feeling helpless when those less strong wanted to shrivel and die in the face of the routine and casual bigotry of strangers.
All that mattered to me then.
But as my life was imprinted with the wheelchair. As I began to experience that kind of daily prejudice, that routine ignorance, that predictable bias, it more than mattered to me - it empowered me. It gave me fuel. I began to feel a flame burning inside me that wasn't there before.
One of the comments recently, from an angered parent, referred to me as a professional who is thousands of miles away from the front line. That comment rankled me because it's never been true. I've been directly teaching, directly supporting people with disabilities my entire career. My caring doesn't stop at the end of the stay and start up with pay the next day. But, I do admit, that a day in the chair out in the community taught me more than thousands of hours of work, thousands of hours in classrooms and lecturehalls.
It taught me the truth of the community.
It takes guts to go out the door. It takes courage to enter the world. Because every day there will be hurt, every day there will be stares, comments, social violence. Every day takes a renewed spirit and a sense that it matters what I do, it matters where I go, it matters the respect I demand.
It matters so I do it.
It matters so you do it.
Because our lives have been imprinted with disability.
Therefore our lives have been gifted with purpose.
The truth of the community. I like that phrase. And, Dave, how anyone can see you as not part of this community in the front lines is beyond me.
I would not be the person I am if I did not have my daughter. I would not be the person I am if I didn't use a wheelchair. I know I am more sensitive to others and I have more courage because of these things. I have fallen short many times of where I would like to be but I have also gotten up after each fall. Before I was Amber's mother I was actually quite shallow but I was also very young then. Hopefully life makes all of us a little deeper. I read in the book, The Prophet this line that has been with me for a long time now..."The deeper sorrow carves into my being, the more joy I can contain." I believe that to be true. Sometimes when I watch my child grow the joy brings tears to my eyes and sometimes the sorrow of seeing the hurt in her eyes when people wound her with their words cuts so deep that it takes my breath away.
I am guessing that comment you are referring to was left by me. I apologize for making any hurtful statements in my comment. I am not a mean person and I don't go on blogs just for the sake of trolling. I appreciate that you spoke up and held me accountable for my comments. I hope you accept my apology.
The parent comment hit a raw nerve with me for several reasons and you were on the receiving end of some of my emotional pain, frustration and bad experiences. My sentiments that I expressed were true feelings but they should have never been written in a style that directed that venom on you.
I don't post often but I read everyday, and look forward to your posts. Your writings are uplifting, they challenge me to think. Your words of wisdom definitely have made a mark on my family's life. For that I thank you.
I hope that the day will come when I can meet you in person, look you in the eye and say these things in person.
I'm always grateful for the way you gently guide toward greater insight. I often find myself nodding, wondering why I'm so drawn to the community, wondering how I can make a difference. Feeling guilty because I'm too tired to volunteer or help other than just being there when my brother calls to tell me he doesn't qualify for disabled transportation because (with CP) he isn't considered disabled enough. I guess he's my community for now, and your posts help me feel like I might matter a bit in making a difference to him. At least I can be there, and listen, and try to grow in my understanding and sensitivity.
I am really interested in the experiences of disabled people when they talk about stares and/or out and out bigotry because I (as a very visibly disabled person) have to say I've not really felt that from anyone as an adult, and ironically the one time I DID feel it was when I worked for a government department and I was a victim of their 'positive discrimination' policy.
I wonder why that is? Maybe it was because I was not treated like a disabled child and the resulting mindset of not actually seeing myself as a disabled person affected the vibe I put out? I don't know, but the difference in experience interests me. If anyone else has also had my 'non-experience' as it were, do let me know.
Dave your blog today is beautiful, as are some of the comments left by others. I love reading your thoughts every day, I love knowing that you and others are there, I love that there are people making a difference. If I can a positive difference in even one person life I will have fulfilled my calling, you impact thousands. I am so grateful for the gifts God has given you!
What a great post.
Rusw: What a very lovely apology. I'm sorry for those who have made your experiences so awful.
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