Deciphering Disabilities

I was thinking about this today, there are so many disabilities out there & so many different groups out there raising money for specfic causes. Whether it be MS, Cerebral Palsy or Autism to many others it seems as if the disability community is very splintered. I have always felt that regardless of the disability we (i.e. the proverbal WE) have a shared expierence in terms of societal treatment. Whether accessibility issues, medical or just plain discrimination most people that I've come across have similar stories to share. While someone like me doesn't share the same symptomology as say someone with aspergers we do share at times similar psychological pangs. A feeling of alienation, not looking what is considered "normal". I could go on, BUT I believe that we must begin to respond as a community - a community that isd wonderful tapestry of both different & shared expierences...What does everyone else think?

Awareness...Perhaps Not!

After my recent medical fiasco (previous post) I had to get an expemption from my upcoming jury duty. I had already had one postponement BUT now I realized I needed a medical exemption. My neurologist was more than happy to oblidge and write a note to the court. So I call the New York Superior Court to straighten out the situation & get on the phone with a woman with whom I proceed to explain my situation & ask about what the next steps should be. She proceeded to ask me the dreaded question..." your disabled & your NOT on disability?" I have to admit I was speechless! I quickly picked my jaw up off the floor & responded that no, I am not on disability I am self employed & combined with my medical condition it would be hard to serve at this time. Again she said okay, so your NOT on disability?

Why is there this assumption that just because you have a disability you must be on disability assistance? Was it her belief that due to my medical condition I was unable to work, hold down a job or just function! This has really sent my mind racing to think that awareness of those with disabilities has come as far as one would hope. That infact we as a community MUST be our own advocates & heed the words " Nothing About Us Without Us!"

DisabilityWorks,inc.: Welcome to the Era of Disaboom!

DisabilityWorks,inc.: Welcome to the Era of Disaboom!

Welcome to the Era of Disaboom!

In this age of personal computers, cellular phone, and mobile device it seems as if people are more shut off thean ever before. Yet, one of the truly epic advances has been the internet & this so called 'information superhighway'. No where in history have we as a spieces been able to connect with one another like ever before. For people with disabilities who have been seperated either by the confines of there own bodies , function or ability the internet has served as the great equalizer.

Today is the dawn of new era, the launch of Disaboom.com! A website that will provide people with disabilities of all ages pertinant information to impact every facet of their daily lives on many levels to a social network to communicate with others that share similiar expierence OR infact completley different ones. My hope is that Disaboom will become for the disability community what it is meant to be - a "Global Village" to share, explore and create new avenues for a betteer way to live.

So...Let's ALL begin on this new journey tgether & LIVE FORWARD!

Musings on A Sleepless Night

Perhaps its the fact I can't sleep or maybe just that a slight fear has been looming about my daily life these days with avengance. But since I found out that I had a seziure last week & walked naked through the streets of New York I have been a bit preoccupied to say the least. These grand exestential thoughts have been milling around my head about the nature of my disability & why has something that I have learned to accept & infact embrace has reared its ugly head. I have felt a certain guilt complaiing, however, I have learned over time that I do not have to subscribe to anyone's social convention that having a disability is a part of my life that is a cornerstone of my identity and denying that would be denying a piece of myself. I guess I have been ruminating a lot these days about the meaning of having a disability & how it impacts your life both in good and bad ways. I also have a fear of being unable to control things at the momment. I mean I am taking the best care of myself I could possibly imagine, yet still there is this feeling that lingers. As I continue to ponder this and uncover these feelings I am sure I will share more but thinking about the nature of one's own disability and how that impacts one's own sense of self or self definition is an ongoing question.

Nudity In New York: A Cautionary Tale

I am going to digress from usual posts to tell you all a cautionary tale. The other night I hd some sezuire activity which was unexpected, yet more importantly served as a real reminder to be more diligent about my medical care. Before the seziure I had taken a shower and got into bed without any clothes. During the night I had some activity & jumped up out of bed & walked out my door & out of my building onto the streets of New York City completley nude! As I retrace my steps I realize my actions where not only dangerous but really scary. From crossing the street to runnng around my block. I am grateful for NY's Finest for helping me get back into my apartment & stay with me while the sezuire activity subsided. What I realized is that I have not taken the best care of myself when my health is concerned. This recent fiasco was a real wake up call for me to be more diligent & continue to monitor my health on a regular basis. So for all those reading this piece - MAKE SURE YOU TAKE CARE OF YOURSELF!

The Return of Capitan Spaz...

When I was a kid my friend use to call me "Captain Spaz" anytime I would start to spasm. Born with a spactic hemiparesis certainly has had it up and down momments. This weekend was certainly one of those down momments. I kept thinking to myself that over the years my pain thershold has gotten so high that I often push myself too hard not knowing what type of damage I can cause myself. Spasms to be have become almost glaitorial in a way. It is a fight between my two selves - the mind/body dichotomy if you will. But being someone who always loves to learn and explore new terrain I have kept asking myself what can I learn from this expierence? To be honest, nothing has come to mind yet. I could make the argument that I have learned about patience and tolerance, however, the fact remains none of those thoughts have raced through my mind as my body is in extrodinary pain. So how does Captain Spaz play into the whole situation. For my friend at least he thought I was heroic enduring the pain and being able to function at such a high level every day. For me Captain Spaz is more villian than hero. Its an alter ego that is part of my physical make up but not something about my life that I care to embrace.

Disaboom Pick of The Week:

After each blog entry I wanted to provide a brief piece of Disaboom.com site that is of interest to me or something to be on the lookout for. With Disability Employment Awareness Month coming up around the corner I think you should not only look for content on careers and employment but also start discussions on these very issues.