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November 15, 2014

So Who's Normal?

I was born with Spina Bifida about 28 years ago. Back then, not much was known about my "disability." The doctor scared both my parents by telling them there was a 50/50 chance I'd even survive. I think they were even given the option of abortion and, thankfully, passed on it.

Since then, I've been proving doctors wrong left and right. I was never treated by my family like a fragile china doll with a disability. I even swung on the rope in gym with a dislocated hip in elementary school. Not that my parents found out about that until after ... but I digress. So I guess you could say that not only have I always seen beyond my disability, but I've never really seen myself as disabled or limited in any way in the first place. Is that a bit dangerous and reckless? Sure. But as they say: "well behaved women rarely make history."

We all have something that's different about ourselves from the next person. In society today, that's usually taboo. Everyone is always quick to change aspects of themselves physically or internally, for the sake of trying to "fit in" with this small little box that other people use to classify them as "normal." I'm not claustrophobic, but that would make ANYONE feel suffocated. No thanks! I embrace my weird tendencies that actually have nothing to do with my wheelchair. Like laughing at my own jokes.

What, you mean wheelies are weird? Sorry, you're missing out then! I don't ever want or need to change for anyone. I'm frequently approached and asked if I ever want to walk and people pray for me left and right to be "healed." My view is this. God doesn't make mistakes. I am the way I am for a reason. If not for the fact that I don't want to have a ninth surgery and the memories I have of walking with a walker and braces as a kid almost give me PTSD, then maybe because I'm just happy how I am. And don't think I don't enjoy the perks of this life ... front of the line in most places, front row seats at most arenas and ... a private lesson with Val Chmerkovskiy from Dance With Me USA and "Dancing With The Stars." What more could a girl want? And if you say, 'Derek,' you can just stop reading right now! *kidding ... kind of.*

I know my purpose is to lead people to look beyond the physical (although, I'm having a good hair day today ... in case you were wondering.) Who I really am is a woman looking to make a difference and show people that the only limits there really are, are the ones we put on ourselves. Frankly, it's so much fun to push past the limits other people put on you. You get to smile sweetly (*cough* sarcastically), say I told you so and (more importantly) inspire a heck of a lot of people along the way. At least I hope to.

First article

Tags: Advocacy; Person Centered

Bagging groceries (almost lost to technology which allows customers to scan and bag their own items), mopping floors, cleaning bathrooms or assembling office supplies in factories ... these are a few types of jobs available to people in the disability community.

That level of work is expected of them. Now some people in the community really thrive at these jobs and that's wonderful for them. However, not everyone finds lasting purpose in doing that work. The usual attitude to this notion is "at least they have a job."

Outside of these types of jobs, there are very few options offered to people with intellectual and developmental disabilities (IDD). During the past few posts, I have addressed a theme of treating every disability (regardless of its complexity) and every person who has it the same. This certainly extends to employment as well.

Relying on these outdated assumptions (like everyone with autism is low functioning, for example) is keeping people with disabilities from being part of the workforce and that is not only depriving them of finding purpose in their lives, but also is keeping employers from untapped potential. The end result if unchanged will continue to rob the national workforce of much needed diversity.

Taking a moment to address the attitude mentioned above, people should be less critical about what type of work they do and be thankful to have a job! Times are tough and I get that. However, even if times were not so tough in the country right now, those jobs would still be the norm for people with IDD. This cultural assumption has been around for quite some time. Any accommodation to aid in doing work is not seen as reasonable, but rather an "undue hardship." Basically, it's great expectations or none at all. Take it or leave it.

Some employers embrace hiring people with disabilities and doing things differently. They recognize that diversity in the workforce allows the mission and vision of their company to expand. Everyone has something to offer and just because it may take someone a bit longer to do something or if they do it differently should not be an impediment to their employment. Everyone deserves a chance to become a productive partner in the community and it is through that chance that untapped and hidden potential can be fully realized and appreciated.

Only 13 percent of the IDD community in New York is employed at this time and such a low number is certainly a cause for concern. The great expectation that should be on the forefront of every employer's mind is that untapped potential should not be wasted.

First article

Tags: Employment

October 17, 2014

Taking Away the Right to Vote

While politicians and other elected officials are making every effort to convince more Americans to vote in the upcoming national election, there looms an unfathomable barrier to people with disabilities as they seek to exercise their most basic and important right as Americans: the right to vote.

Los Angeles is one place in the land of the free, for example, which is requiring thousands of people with autism spectrum disorder, cerebral palsy and other intellectual or developmental disabilities to pass a literacy test before being granted the right to vote. This is an outright violation of the federal Voting Rights Act.

The problem does not end there. After doing research, I found that this type of discrimination has been in place in some form or another for decades, and that only 12 states in the nation do not have laws limiting voting rights for individuals based on competence.

Twelve out of 50 states plus the District of Columbia ... That's stunning and certainly not in a good way. The U.S.A is called the land of the free for a reason, more than one reason actually. However, it is not the land of the free to discriminate! Yet, somehow, city and state governments keep getting away with it.

We want people to be informed and participate in the voting process, yet we still make extremely difficult for some individuals to do so. Let's take autism for example. There are many different types of autism and there are many different types of people on the spectrum. To quote a parent advocate, "Autism is a broad spectrum, and there can be low skills and there can be high skills. But what I observed was that people tend to just dismiss it as though they have no skills." The same is true with cerebral palsy. It is way past time we stop viewing every disability category as if it affects everyones who has it in the same way. Every individual with a disability is affected in a personalized way, no broad-brush strokes allowed.

If a person wants to vote and can state the desire to do so, then they should be allowed to vote. This is about freedom; the freedom to cast a vote and be counted. Last time I checked it was that sort of freedom upon which this country was founded.

Here in New York, I wonder what it says about the state when we still use lever voting machines? Machines that are wholly inaccessible for people with disabilities and that are so out of date that production of them stopped completely in 1982. Think about that for a minute and then ask yourself if any of this makes sense? When we question people's competence by using outdated assumptions and limiting accessibility, we are violating a
basic right of every American. On November 4th, let's let freed ring for people with disabilities by sending a message for greater accessibility

First article

Tags: Autism; Advocacy; Independant Living

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