Air Story

• January 24th, 2007

It was the flight from hell, London Gatwick to Norfolk Virginia. One I have taken more times than I can count but this one stood out. First there was no upgrade available which I attributed to flying on a Friday instead of my normal Saturday schedule. So there I was in the middle seat in coach after a long week of work and an even longer night prior of socializing in a city that I totally adore. Headwinds were strong due to recent weather in Europe so the flight took longer than normal. Arrival in Newark brought more bad news, cancelled flights across the country due to high winds in the area, so in essence all small planes were grounded through the early evening. I was looking forward to being home around 5:00 p.m. and now I was being told it would be more like 10:00 p.m. I’ve traveled enough to know that no amount of fretting or frustration changes things in an airport, when you check your bags you also check your control over your destiny at least in the sort term. Well the 9:00 p.m. departure changes to midnight and by the time I see my home and most importantly my bed it’s 2:00 a.m. I had been awake and traveling essentially 25 hours. Unfortunately I had scheduled a day of facilitation with a local University board of directors the day after I returned which meant I needed to be up and going in 4 hours.

I find these circumstances, to be just about perfect for self pity. And this one was no exception. As I was just about to fall asleep I began thinking about an incident during my time in England. I was waiting for a train that was late due to the weather once again, (do you detect a theme here) and an elderly woman was standing next to me. She was dressed in a skirt and sweater and a warm coat. Her shoes were practical and appropriate for her swollen legs and ankles. She clutched her purse and peered out of her well worn spectacles down the empty tracks with a look of serene resignation. At one point she looked at me looking at her and said “when did they tell you the train would come?” I said soon, in about 10 minutes and she said “that’s what they told me 20 minutes ago”, and then she smiled, a sweet, grandmother like smile. I held this image until I drifted off but it has remerged several times this week.

I have been thinking more about her and more importantly what she represents to me throughout my day of meetings, discussions, trainings, fundraising, mentorship and the other assorted tasks and responsibilities that have engaged me in this thing I call work, but in truth is just my life. During my section tonight of orientation for new staff I asked the question, “Why are you here?” I received the standard answers, “to help others”, “to support my field of study”, “to supplement my income”, but one person said “to be someone you can count on, to keep my word in a world where it is often not kept and even more often those broken promises were accepted by those who believed it in the first place”. I loved this woman and I knew she knew about this work we do, this quest we strive for… I recognized her and saw me so long ago when I would never have smiled sweetly at a broken promise or refused to wait when it hurt. The woman at the train station was disconcerting to me now because she represented someone who had become use to broken promises and waiting, someone familiar… me.

Pillow Talk

• January 10th, 2007

A nine girl old girl is loved by her parents. Such a strong and enduring love that they sought a treatment for her that involved the removal of her uterus, breast buds and associated milk glands as well as her appendix. Once this was done they then authorized hormone treatment that would stunt her growth and fuse her bone plates so she would not grow in to a adult, but remain physically a child.

Rationale? Well the uterus was removed because she would never need it and she could be relieved from the curse of menstruation. The breast buds were sliced away because they may cause her discomfort when fully developed and worse yet, incite others to molest her. The appendix was an afterthought, but in case if eve became inflamed and she was unable to communicate the pain, they thought it best. And finally the hormone treatment was administered to keep her small, easily carried and moved about, the same type of treatment used for teenage girls in the 60s who were growing too tall for their male counterparts.

Reading this without putting “with disabilities” in the first sentence would most likely create outrage… yet with those two words medical doctors, the ethical hospital panel and many parents of children with disabilities think it makes perfect sense. Butcher a human being because it’s best for them. Refuse an individual from growing in to an adult because it’s best for them. Control human beings who do “not fit” because it is best for them. Why is this so familiar? Because it’s been going on at different levels for centuries.

I am so distressed by Ashley the “Pillow Angel” that I am almost unable to comment on this situation… yet I must, I am compelled.

What if Ashley had been named Adam, would the testicles be removed? I wonder. Why not take off her arms and legs; she is not using them either? Visions of the movie “Boxing Helena” dances in my head.

OK, rant over. This is just one more example, albeit a tragic one that so accurately reflects the state of affairs for people with disabilities. With all the talk, person centered planning, being in control, money following the person… it’s not good enough, it’s not good enough, it’s not good enough… it’s just not good enough. Because somewhere in Seattle a family feels alone and without supports and thinks carving their daughter up will make things better.