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.

The world on a Thursday

there are those days where one looks around and realizes they are alive and really really part and parcel of their own experience....at lease I have those days. The thing I have discovered is that I am so busy doing things that I sometimes forget that I am creating my life while I am doing. I used to live in a headspace where "do" was separate from "create" which was separate from "fun". Somewhere it all began to blend together. I became a mum, a student, and an activist. I became less of a by-the -clock worker, in my insomniac-spare-time artist, singer, lover, friend, athlete. It was all so gradual and overshadowed by immediate and necessary action--feeding children, writing papers, taking exams, filling out forms, going to doctors, arranging and then juggling childcare...
I love what I do these days. I love connecting with other activists and writing about what is going on in this country and others. I love going to conferences and board meetings and arguing for rights for women, mothers, students, disabled persons, children. I love my children. But I must admit do not enjoy the stress of it all right now. There is nothing to enjoy really when every minute is spent scrambling to address needs. I miss how much fun it can be.

on a Tuesday

this is one of those days. I came across a woman hating website that blames single mothers for all the problems of difficult teens, the lack of morality in the world. While said site rants on about the failures of single mother led families, it fails to mention POVERTY and LACK OF RESOURCES as possible reasons/explanations why women led houses may have multiple challenges. I will write more on this at a time when i am not so challenge by a day.
further on my day, i had a productive morning working on the NAAS survey. i have gathered what are hope are the key articles, read and made notes on them and now i write.
my reminder, from the servants of the gods, that I am only a single woman with disabilities and two sons with challenges beyond even professionals capable hands, is this--no daycare for you woman, parent, activist. I was fully funded and had been lead to believe all would be fine and so patiently waited while they were late with the paperwork. NO IT IS NOT OKAY to change a woman's funding like this. what it means is that i have to withdraw my sons out childcare and try to still work from home with them arriving a little after 3 PM and that they will be home and active as ever on all pro-D days and all holidays ( i have to work through this and it may mean working at night and sleeping while they are at school. I certainly do not wish to turn to the days when i was working, completing school and not sleeping leading me down the path of nervous breakdown.
I am going to rant and rail at those of you who are sleepy or lazy or ill-informed...get your sorry butts out there with your ID and your proof of address and VOTE on the 14th. you can find what you need on the web and you can research online the candidates. make good choices. show respect for the diversity of people who live in our country when you think about who should lead them. do not live as a person who does least harm, but as a person who does their most good in all situations. and when you can't breathe and think how you can still keep working. I have experienced great moments when like minded people came together, organized and stood past the cold and voted. the ability to change the world takes commitment of the best that you can give. that best changes on a day to day basis but it is the potential in each individual to do this.
ps I watched a movie that made me cry but still found inspiring--My life without me, 2003 directed by Isabel Coixet, starring Sarah Polley, ... It is based on the book Pretending the Bed Is a Raft by Nanci Kincaid. I so want to read that book now
I am off for now and hope a better day is ahead. I have not yet written my experience attending STAND for Housing put on by CALM at Little Mountain. personally, i wanted to squat in one of those empty suites to escape my heatless hell called home.

Back from Ottawa

so here i am home now and cringing with a migraine...ah allergies and weather combine to torture me!
the CRTC meeting was extremely informative. it's amazing what goes on behind doors that really effects such a large percentage of Canadians. The accessibility hearing is halfway done and many groups have only just heard about it (http://www.crtc.gc.ca/PartVII/eng/2008/8665/c12_200807943.htm). many thanks to the CCD (http://www.ccdonline.ca/) for getting us out there and bringing disability groups up to date on the event and the next series of discusions.
i will keep info posted here and on my facebook site.