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.

Jerry Lewis...Again...!

Well, Labor Day has come and gone & the annual MDA Telethon which seems to be a yearly ritual that we in the disability community seem to be subjected to. I only watched a little snippet here and there because it is just too painful. Over the years we have seen the MDA telethon prey on the stigma of disability and perpetuate what I and most in the larger disability community find offensive. While the MDA does wonderful thing providing funding for research and services I think that the telethon needs a general overhaul...just a thought!

Disaboom Pick of the Week:

I am starting a new pick of the week for Disaboom.com, a lifestyle website for people with disabilities launching this fall. There are a series of interesting posts on the Discussion Board on infant amputees, aging & cerebral palsy and a host of other areas...I will keep people informed of new & exciting things coming out of Disaboom...so click on the link on the blog if you want to see this new and innovative site!

It's Just Words Silly....

or is it? The disability community over the years have been defined, cateogorized and empowered by the languge used to encapsulate the disability community. Words like cripple, handicapped, disabled or special needs have been the moniker the establishment(i.e the medical/psychiatric and governments) have placed on people over the years who have a physical, cognitive or developmental disability. These words have been helpful for medical practitioners to find the right treatment models and government agencies provide the right benefits and services. While there are many positive aspects to words there has also been dark side in the equation. Like other minority groups language of the disabled has often been derogitory and used to be something hurtful rather than empowering. Yet, there is light at the end of the tunnel. Like other movements people with disabilities are finally taking 'ownership' of the words they use and are embracing the language of disability. Whether it be using phrases like "crip culture" or "gimp"- these words that were once seen as slurs have now come out of the shadows and are part of the lexicon of a progressive social model of disability. We are at a time where the ability to use words has become more democratizing than ever before. With the dawn of the information age people with disabilities are given access to a 'global village' where they can express themselves through the lens of their own particular narrative and explore and develop a new language of disability. On a personal note, one of the most thrilling things for me currently is to see the birth and evolution of a new website called Disaboom (www.disaboom.com/link/jkpr) a lifestyle website that focuses on the ever changing disability community. One of the elements that makes this website unique is its ability to redefine the words and language of disablity in the 21st Century...now how cool is that!

Summertime Blues

Ahh, the dog days of summer are upon us once again. For many this means a time to take a holiday and get away from the daily grind of work, life and routine. However, for others it is a time to focus on the fall and develop new employment strategies. Over the past two years I have been working with a variety of young adults in their 20s & 30s who are along the autism spectrum and those pervasive developmental disorders (PDD) such as learning disabilities. One of the great challenges for me has been to see how hard it is for them to find paying jobs. Whether it is an ability to search for work or companies not providing the right support for more 'high functioning' young adults with these types of disabilities is debatable. The fundamental question that I have been struggling with is how to connect the dots? A big movement within the disability field has been customized employment which has begun to gain real success with those with physical disabilities. However, with those with more cognitive disabilities or 'invisible' disabilities it is harder to pinpoint and create customized work places but beyond that those with more cognitive disabilities such as autism or learning disabilities need a greater infastructure to work with. This means job shadowing, social support and other options. Yet at the same time this can become an intrical part of the future of recruting & employment policy within organizations. As new college graduates enter the job market the dog days of summer is the time for companies to wake up & see a broader pool of young talented workers that can do things & want to work. I have a saying play to the strengths of the individual! It is time to take up this as a clarion call!

The Launch of a New Era: Disaboom!

Over the past few weeks I have been in negotiations developing a strategic partnership with a new company called disaboom. (www.disaboom.com)Disaboom is a new online community for people with disabilities providing an array of services from social networks, employment, to a host of other valuable resources. What has been the most attractive draw for me was the passion that the founders and new mangement team have for this new venture. This is not just your run of the mill entreprenurial endeavor but rather something that has real purpose and meaning for all involved. The founder Glenn House, a physician and parapelegic himself understands the daily life of someone with a physical disability and wanted to utilize the technology avaliable to create something that not only connects the 56 million Americans across the disability community but ber a place where the 600+ million people with disabilities and aging community ( many of whom will be dealing with disabilities) a community to share, find information & create a true global village if you will.

I am eager to see where this idea can take the disability community. I am a firm believer that this is the time for a company like this to emerge and become a trailblazer...let's move forward into the Disaboom nation!