when is it a disabiity and when do we band together...

this has been a discussion that I have had many times in the university and in the work environment.

Accommodation is really what I have heard individuals struggle with. Invisible disability/disabilities is a challenge for those who live with them and for those who are not sure how to accommodate or include these individuals.

I appear to have (on most days) invisible disabilities. However, on a bad pain day (one of my challenges is physical), it becomes very obvious that I have a hard time walking and lifting things. I also have serious environmental, food and other allergies--these although invisible can kill me in minutes if I am not aware of my environment and diet all the time and make others aware. this alone has caused an air of exclusion to rise up when those planning events do not want to exclude certain food (such as peanuts) or inform guests not to smoke (not such a problem now) or not to wear perfume (when asked I find people still ignore or do not understand this. Several injuries and incidences (and genetics and health conditions) that have lead to disability are complex and the stories are not ones I want to share with everyone. Sometimes people are not satisfied with the label of the disability, they want to know how it came about or how it effects the person. Knowing something or one level when required (for say accommodation) does not give anyone who is not a friend the leverage to ask for more information. Technically, a doctors note is all that is "required". Personally. I am all about educating whenever possible, but have experience serious discrimination when I have been open about my experiences.

Further, for those with disabilities that are "visible" it is not required by you to state anything other than your required accommodation (for example why you are in a wheelchair or use a walker or if you were born without vision or hearing or if you have had an injury or disease that resulted in your present disability. It is your choice.

the question about when something becomes a disability rather than a condition is convoluted and perhaps set up mostly for funding agencies and doctors. BUT I believe it changes from one definition to the other when-- first the individual acknowledges it, and-- second when that condition has presented itself for long enough that one would recognize that the situation is not going to change and the "condition" is affecting the persons ability to interact in their life (job, school, home, friendships) and is likely to be permanent. All these things are so very complex and personal. A person who is born without vision has a different sense of the situation than a person who has a degenerative disease that will lead to blindness. the moment when the condition or health issue changes from health problem. disease, injury to disability is indeed a difficult moment to define.

earlier someone asked why deaf was separate from disability--the reasons for this as I understand them are that in our society, most persons who are deaf (not necessarily hearing impaired) do not consider themselves disabled (that is a label from outside). they are a unique society with their own languages. However, in moments when it is important to join with other groups, to fight for specific and universal access rights, many individuals who are deaf join with the larger disability community.

so there are my thoughts on it (well a couple of them anyway). I know that a discussion like this is fraught with toes that can be stepped upon. It is not my intention and I do hope not the intention of anyone in for an open dialogue. We as a group of individuals who face daily struggles trying to adapt to an environment that does not keep us in mind as it builds...we must challenge it and do so together (in specific and in diverse groups). this world only makes change when it is nudge and often kicked into doing so.

ponderings on a child and his alternatives

so my son is for the second time this year suspended. Everytime he is in the regular school system he is suspended over and over to the point that it has affected his education and he now has gaps in learning. Last year he went to one of the most amazing programs I have ever seen but unfortunately, due to funding, this program is only for one year, usually.
So here i am. a parent seriously worried about the future of my child who has a very challenging condition. He is very smart, very funny but completely unable to "swim" in the school system that has been built up in this country.
I have a very good friend who has a son with autism. she home schooled her son when he went from being verbal to stuttering. He was home schooled for 4 years and then slowly reintroduced into mainstream of a school she chose. She is my hero. He has done phenomenally well. She has listened to my struggles with this school challenge.
On Thursday night I thought long and hard and then called her and asked her advice on home schooling. She knows that I work from home and that I am an activist for the communities I support. After two evenings of discussions, I have decided at the "suspension" meeting next week, I will inform the school that he will no longer be attending their program. I do not feet that he is safe and I am not sure that other children will be safe as he is growing bigger.
I have felt a weight lifted, although this means that I will have to juggle my work (which i do from home or out of town), I feel already less stress, as he will not be somewhere out in an environment that does not have his best interests at heart--and how could they? they are understaffed and over worked and only recognize "certain" disabilities.
At home, he can do his work while I do mine, and we can do the outings that are necessary and maybe the extra close mum attention will help in ways that all the stress of school and their teams and their meetings will not.
I know my child and as much as he is so very challenging, he is also funny, and very intelligent and capable of great insight and kindness. I refuse to see any more of that destroyed.
so here I embark on another new path, home schooling my child. wish me luck.