To be Inclusive or not to be Inclusive

Since I have moved to New Jersey I have been struggling to understand its school districts’ policies toward, and treatment of, children with disabilities. I grew up in a school district where all the schools were accessible… growing up I only had the vaguest idea that “special schools” existed. I was mainstreamed from a very early age and I excelled in everything I did… well, ok, chemistry and calculus were tough, but those classes are supposed to be tough. There were also many other kids who excelled in the “regular” classrooms with minor support from the special education department. Sure, my school district had special education classrooms, but the kids that needed that level of support still walked the same halls, ate in the same cafeteria and participated in the same school functions as the rest of the student body.

As I have moved around the country, I learned that “special schools” do exist, but it has always seemed that the emphasis was still on keeping children in their home district if at all possible. In New Jersey, at least in the counties around where I live, I have not seen much effort toward inclusion. Schools are older, yes, but with buildings that large, I can not see why all of them can not be made accessible. Many high schools appear to be wheelchair accessible but fewer elementary schools are. I am disturbed by this because, in my eyes, young kids are shaped by what they are, and are not, exposed to and so this inaccessibility hurts not only children with disabilities, but those without disabilities as well. Inner-city schools (not just in New Jersey) tend to be accessible less frequently than suburban or rural schools; money being the obvious factor causing this. I have to wonder, though, at what point does all that money those schools are losing yearly by these children going to other schools surpass the amount of money needed to renovate the school, making it accessible?

I have heard that many parents who have children with disabilities, particularly those residing in inner-city districts, do not want to send their children to the local school even if it is set up properly because they do not want their children teased and/or the parents fear for their children’s safety. While I can surely understand the safety concern, if it is legitimate, it would be a risk to all children with or without disabilities. I do not know if parents should be allowed to use this as sort of a “special education get-out-of-jail-free card.” On the other hand, I also do not know if I can argue against a parent sending a child to a “better school” if the opportunity presents itself… the question is, how does one make that determination when all factors are considered. If fear of teasing is the main reason, those parents need to realize that they can not shelter their children from this forever, especially given the fact that, once their kids finish school, they come home to that very same area those parents were trying to shield them from. It is a tough world out there and our natural instinct is to protect, but overprotection is just as hurtful, if not more, than what those kids are being protected against.

Is Cheney Dr. Strangelove?

During yesterday's historic presidential inauguration, Dick Cheney could be seen in a wheelchair. Apparently, he sprained his back recently and it was too painful to walk. Considering all the stairs visible along the path to where all the dignitaries were seated and President Obama was sworn in, I do not blame him one bit. Why he was in a rickety hospital-style wheelchair, considering how easy it would've been for a person of his influence to procure a rental of much better quality, is beyond me.

Much was made of Cheney's appearance in a wheelchair by numerous commentators covering the event. One such observation, made by Tom Brokaw of NBC News, suggested that many might use this opportunity to compare Cheney to Dr. Strangelove and that Cheney would not be too happy about it. Dr. Strangelove is a fictional character from the 1964 Stanley Kubrick film by the same name. Dr. Strangelove is an ex-Nazi nuclear physicist, a mad scientist of sorts, who happens to be in a wheelchair. It is subtly implied that his being in a wheelchair is a consequence of past evil deeds. He even has "alien hand syndrome" where one of his hands seems to have a mind of its own and tries to strangle Dr. Strangelove on several occasions. It was not uncommon in film during this era for "mad scientist" antagonists to have disability/disabilities and, even though it is far less common today, this trend still exists.

As a person with a disability, I feel Brokaw's observation (mirrored by other journalists since), that people are going to think that all the wrongs Cheney has done have put him in a wheelchair, was a bit out of line, especially considering that Brokaw himself probably caused more people to draw that connection than those that had already drawn it in their heads. I am in no way claiming Cheney is a good man (I despise the man), I am instead arguing the fact that the connection was unfair to people with disabilities everywhere. Having a disability should never be thought of as a just consequence for past sins.

Brokaw, a man I deeply respect and have enjoyed watching for years, had every opportunity to connect what will likely be a short stint in a wheelchair with something, anything positive about disabilities. A very good example would have been to discuss FDR's modifications to the Whitehouse that laid the foundations for future modifications that has allowed Cheney to use a wheelchair in the Whitehouse almost 70 years later.

I'm sure most, if not all Americans are tired of Cheney's antics and are glad to see him leave, but Brokaw and others who have made similar comments have the journalistic responsibility to make sure no minority group gets caught in the crossfire and to ensure stereotypes such as this are not perpetuated. Journalists may not believe the stereotype in question, but bringing it to the forefront of viewers'/readers' minds is just as damaging to people with disabilities.

Yes, I'm Alive

Well, it's been a year since my last posting and I'm quite surprised my blog is even still here, let alone active. It has been a crazy year for me in terms of my health and my environment, but I feel like myself again. My New Year's resolution will be to start blogging again, even though I've likely lost almost all my readers (not that I had any to begin with) after not posting anything this year. There were times during the course of the year where I've thought of something to blog about but I just never had the desire or the energy to do so. Part of it I attribute to the laziness I have with regard to any kind of written correspondence (e-mail, letters, thank you cards, etc.) but I think part of it is that I've just been a bit lost, frustrated and lonely since moving to New Jersey. However, I'm looking toward the future now, and the plan I'm putting in place, and I feel my spirit returning to me. 2009 will be a better year, I'm sure. To those that are listening... enjoy the holiday season.

On the Mat Yet Again...

I've recently had hip surgery and it has, like my hip surgery in 1999, been a difficult one to recover from (explaining why it's been such a long time between posts). My body sure can't recover like it did when I was a kid. I've lost weight, like I do after every surgery I have, but it's definitely affecting me more at 25. Yet, despite my slow recovery, I know I will heal and move on with my life.

People with disabilities often have countless surgeries and experience great pain that few without disabilities can say they've experienced. I've had 14 surgeries, and this is on the low end compared to others my age who have the same disability as I do. Fourteen punches that have knocked me to the mat and still I get up (cue Rocky theme music). I get up because I refuse to lie down and accept the fate that some in society think is my fate, just as my parents refused to believe the fate doctors said would be mine. I get up because I want more out of life, I want to experience a rewarding career, I want to experience true love and a family of my own. I get up because my theme music is not yet written.

Recently, another man has been knocked to the mat yet again, just as I have. For those of you that follow the NBA, you will know that Alonzo Mourning was injured with a torn ACL, which, given his age, may end his career. For those that don't know Mourning, let me tell you about him. For just over 8 years Mourning was a dominating force in the league and then he was stopped dead in his tracks by kidney disease. He had a transplant and few thought he would play again... but he did and has become a hero figure to many. Do I think he'll be back? I'm not sure but I wouldn't put it past him.

There's a lot to be said in the quality of a man or woman who just won't stay down. If you keep getting up again and again, heavy hitters eventually get tired and you get the best of them. I'm going to keep getting up so I can get the best out of life.

When the Chips are Down...

Most people who know me well know that they can count on me being there when it matters most. I am excellent at reading people even from afar because I have been observing people since my childhood. People that know me also would say that if someone challenges me in any way, he or she better be prepared because I am coming with all I've got and probably have a few tricks up my sleeve. When my abilities or my character is called into question I love to prove people wrong.

With all this in the back of my mind, over the past few months I have realized that I can be a very good poker player with a little polishing of my skills. Over the past few years, I have played casually with my friends, usually losing when I first started but gradually I have learned the game and its strategy. Recently, I have done nothing but win and decided that I should take it to the next level and try my luck in the casinos.

And then something occurred to me... people who don't know me hear my slurred speech and see my spasticity and often incorrectly assume that I have an intellectual disability. Usually, I try to dispel this assumption as quickly as possible, but at a poker table this might not be a bad thing to just let go. I thought that I could take everyone's money before they figure out how smart I really am. However, after talking this over with a close friend whom I have known since childhood, he disagreed saying that at a poker table the good players never underestimate anyone. There was only one way to find out who was right.

He was.

Whatever advantage I may have had when I sat down at the table was gone after I won my first big pot. However, by the end of the day I had realized something very important: people respect me pretty fast if I take their money. Poker, if I'm good enough, could be another avenue for me to promote disability awareness... and I can make money at the same time. In the end, disability awareness is about respect... showing respect to those who are different than you. When the chips were down... I gained that respect from more than 20 people who, hopefully, will be changed forever.

Author of Life?

I've been recently pondering whether I should write my autobiography now (having it culminate using the same logic as in my June 4, 2007 entry) or wait until later in life. And while I have come no closer to making a decision on that, a playful concept has developed in my mind that I wanted to share. What if our lives were the creation of some "celestial" author sitting at his or her desk, writing a novel? I'd like to put aside any religious references or comparisons and just have fun with this for a bit. What implications would this have to our view of life? Would this mean the concept of fate is absolute? What would be the author's intent behind the characteristics assigned to you (appearance, flaws, disability, etc.)? Is the author just writing the novel for the sake of writing, or is there some other motive? Would this novel encompass your entire life or is it one of many in an anthology? What happens if the author goes back and wants to change a part in the novel? Perhaps it is the ultimate witness protection program...

These questions have been fun to ponder and have allowed me to escape to the quiet recesses of my brain. However, there has been one question that has intrigued me much more than all the others... What happens when the author's main character gains awareness that he or she is, indeed, a character and begins to fight back, demanding autonomy? Is there a rip in the page, exposing and merging these two realities?

Happy thinking!

Regarding My Recent Posts

Strangely, the last two posts were not published to the outside world, just to me. I think I fixed it and I apologize for the lack of updates, even though I really was writing entries!

Stamps

While I think it's a crock that stamps have gone up four cents in the last year, this is not going to be an entry about the USPS. I work with many consumers living in skilled nursing facilities (politically correct word for nursing homes and institutions) in San Diego. Recently I was appalled to discover that one such facility charges their residents 45 cents per stamp... two cents above what the stamp is worth. As far as I know, there is nothing illegal occurring, it is merely a matter of supply and demand, but this is morally and ethically despicable. The severely inflated costs of health care are apparently not enough to keep their wallets and purses full. Due to state regulations residents of these facilities who are on SSI or standard Social Security (95-100%) are only given $50/month allowance. Most parents give their children more than this. If a person smokes this money is gone in an instant. $50 is typically not even enough to pay for a decent cell phone plan, so residents must rely on nurses being courteous enough to tell them they have a call at the nurses station (yeah, I'll leave that one be). With this in mind, letters may be a resident's only connection to the outside world. Tell me, then, why you would want to make a profit off of it?

Notes on a Graduation

Well, I've officially graduated with a Masters degree... a feat that the doctors who botched my birth would have said was ludicrous. Looking back on my 20 consecutive years of schooling has gave me time to ponder whether it was worth all the trouble as I now move forward with my life. It has not been an easy journey, as there have been plenty of physical and attitudinal barriers that I've had to overcome. Those barriers were all, one by one, removed, won over, silenced, or obliterated in some cases and all that remains is a wall full of degrees, honors and accolades.

I'm extremely proud of that wall, as anyone who has accomplished what I have should be.

...but should there be any special recognition given to my accomplishments; a proverbial asterisk included because I have a "significant" disability?

Most of you who know me well will be shocked to learn my answer to this question is yes, but let me explain before you pick up the phone and ask if I'm on drugs (which, as a matter of fact, I am on some pretty cool pain killers right now!). I do not feel that my academic achievements have been very spectacular. Anybody with my intellect could have done what I've done and surely done it better because I've been known to not apply myself very effectively on numerous occasions. I was not valedictorian, was not in any of the cum laudae groupings, and did not conduct any earth-shattering research (though I tried). I also do not feel that reaching this point academically having a "significant" disability in and of itself is worthy of special recognition either. My disability has not affected my mind (aside from adding a sickness to my humor, perhaps) and there have been adequate accommodations available to enable me to complete my work as diligently as I chose to complete it. A person who looks at me, sees me as a person with a disability, and thinks it is so wonderful and inspirational that I even go to school... their praise and recognition does nothing for me.

The reason I think my accomplishments are worthy of special recognition is because I have succeeded in rising above the social expectations unfairly placed upon me. From the doctors who said I would never read or write, to the therapists who thought physical therapy would get me further along in life than academics (as if I'm going to make a living running marathons...) to the university professors who thought I'd be crazy to pursue a counseling degree because of my speech impairment, I have proven them wrong time and time again. These degrees are proof that I have broken free of the shackles that many promising individuals have been imprisoned by and have had their spirits broken by an immense weight that should never be placed on anyone. I have been through the firestorm and have emerged with the prizes I set out to achieve long ago and now there's nothing this man can't do; nothing he can't change.

Remembering Beckwith

Coming to the University of Illinois from a small town in Michigan where the total population was smaller than the number of students at the university I would call home for four years was a daunting thought. I was going to a place where I did not know anyone, in fact, the only thing I did know for sure was that this was going to be my opportunity to break free of the falsehoods and misconceptions society had placed on me because I had a disability.

Education was, and still is, going to be my ticket to freedom, but I still needed to learn how to best harness that freedom; Beckwith Hall was to be my training ground. Over the three years I lived in Beckwith I was transformed from a shy young boy into a confident young man with the potential to change the world for the better. I learned to manage my life without the safety net of my parents and manage stressful situations with grace. With that said, Beckwith was a minor part of my college days, which is what Beckwith was truly meant to be… minor. Beckwith’s true legacy is to prepare young people with disabilities for the real world; to be that step stool from living at home with your parents to living on your own. Beckwith provided me with just enough support to allow me to spread my wings and take flight. I earned my bachelor’s degree, worked several jobs, made numerous friends, participated in many organizations and made an impact on an unknown number of lives. Without Beckwith Hall, none of that would have been possible.

After my junior year I ventured outside the walls of Beckwith and got an apartment with another one of Beckwith’s now alumni. It was a good opportunity to gain the experience of true independent living with the comforting knowledge that support was still just a few blocks away. In the blink of an eye, the year was over and I decided to take a giant leap and move to San Diego, CA for graduate school, 2,500 miles away from my family. Once again, I willingly placed myself in a daunting situation but, this time, thanks to Beckwith, I was armed with the confidence that I could handle life on my own. Without those three years at Beckwith Hall I am not so sure I could have handled living here in San Diego since 2004. Beckwith taught me a great deal, through practical experience, of the techniques and strategies I have had to use to get through personal assistant shortages, transportation difficulties and a whole host of other crises.

The point of this very tardy blog? Never be afraid to take risks and stand out where you could get hurt. If you are a member of a minority... any minority... you must be willing to take risks; to fight for what you want in life if you are to ever come out on top. Martin Luther King, Jr. once said, "Freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed." As I have said in previous blogs, many people look at me as an inspiration, even though I feel as if I am merely living my life to its fullest. If you have the confidence to take risks and to seize opportunities as they present themselves despite society's efforts to oppress your individuality and the great worth that is innate in all of us... you, too, will be an "inspiration" to many.