Lessons Learned

I thought that I had a decent awareness and understanding of concepts like accessibility and inclusion, of not just tolerance but acceptance of individuals with disabilities in society as equals especially because of my experiences as a special education teacher and advocate for inclusionary practices in education. Perhaps my awareness and education about the subject was greater than average, but it was still so incomplete. This has become clear to me recently as I have found myself interacting with the world from the position of one requiring a wheelchair for mobility due to a still unexplained loss of muscle strength and change in muscle tone. I have discovered that accessibility is so much more than I would have ever imagined. There are so many subtle issues to being able to access a store or a building that I never considered, far beyond whether there are stairs or a ramp. Things like adequate aisle space, objects cluttering and blocking the aisles, the positioning of so many objects so far out of reach, and certain areas of stores being designed in such a way that it is impossible to access them in a wheelchair. It is also attitudes. I have been blatently stared at while out in public countless times, as if my humanity disappeared the minute I ceased to use my legs as my primary source of mobility. Then there is the constant assumption that because I am using a wheelchair to access the world, I must have surrendered a great portion of my intelligence as well. My heart breaks for how my kids must be treated in public, the stares and comments and the lack of dignity when they are spoken to and how desperately they must long for a way to communicate the message that they are still kids and to get over it. I have to rely upon publc transportation right now, since my vehicle is still hundreds of miles away and I do not think I would be permitted to drive anyway, and this too has been a startling experience. It has been engrained into my being that all people are people first and then they may happen to be people with a disability, but apparently few people in the world recognize this. I have been referred to as "a wheelchair" more times than I can count. I am not a wheelchair anymore than someone who walks is sneakers - my method of mobility does not define me- yet how often this happens to my kids breaks my heart. They are automatically defined not by their unique personality, not by the fact that they are children, but by their diagnoses and disabilities. For convenience, for ignorance, for prejudice, for simple labels they are reduced to that with which they struggle instead of all that is so gloriously right and perfect and beautiful and incredible about them. My first year teaching I heard my assistant refer to my children who were non-ambulatory as "wheelchairs" and gently, but firmly explained that I would not tolerate such language never expecting to hear it again. I am saddened that so much ignorance remains and to know that this is the world my kids are up against. Yet I am all the more proud of them for their spirits, for their determination, and for their families who are unwilling to conform to the definitions provided by the world for their children or themselves. Right now seems like a very difficult time in my life as I am having to fight so hard to regain all that I have lost, but I have also gained so very much. I have gained such incredible insight and awareness of the world faced by my kids and their families that I could have never known without living it myself, and I will treasure the wisdom and appreciation from this journey that has changed my heart forever. If anything this will have made me a more dedicated, passionate, compassionate, aware, and advocate teacher.