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Breath & Shadow

A Journal of Disability Culture and Literature

Spring 2017

Volume 14 Issue 2

 

 

Breath and Shadow
 
Spring 2017
Volume 14 Issue 2

Stephen Hawking Has it Right

By Daniel Mart



"I don't have much positive to say about motor neuron disease, but it taught me not to pity myself because others were worse off, and to get on with what I still could do. I'm happier now than before I developed the condition" -- Stephen Hawking


My name is Daniel and I am a student and I get horny.

Cue the mix of nervous laughter and hypothetical high-fives here.


Like, at times, really, really horny. Not all the time, no. Yet a pretty decent amount.

Never have I had a girlfriend, and I am, well, let us just say, "extremely sexually frustrated."


Okay.


That was odd...


Strangely and, yes, perhaps a bit disturbingly blunt.

Got your attention, though, didn't it?


Why start off with such a confession?


Why follow up an inspirational quote from the smartest man in the universe with ... this?


Does it cause you discomfort? Are you shocked?


No?


Well, then. What if I were to tell you that I happen to be physically disabled?


Because I am.


How about now?


It is odd, ya know, the stereotypes in society. Yes. Things are, in a way, changing. Thanks in part to films such as The Sessions and The Theory of Everything.

And yet, in some circles, they -- the stereotypes -- also remain very much alive.

Here we have the one mentioned above: that disabled people are somehow asexual. That we neither, I guess, "desire sex” nor ... deserve sex? I guess?


And then of course there is the view that disabled people are automatically on a "higher plane," per se, than most people. It is not a bad thing; don't get me wrong. If anything, any disability stereotypes offer up the opportunity to prove one’s self to others, to demonstrate capability. And in many cases, to in turn better society.


Which brings me to...


Who exactly am I?


Aside from being the “sexually frustrated” individual described above, I consider myself to be a hopeless romantic and one of the most sentimental people you will ever meet.

Huge classic film buff and a great advocate for the preservation of older theatres. Musical theatre is another one of my deepest passions. One of my goals is to someday make it to New York (the underlying issue of humongous institutional discrimination against disabled artists, both on-stage and off, in major community and national mainstream theatre can be reserved for another paper).


I hold onto a deep belief in God. I also have depression; extreme, at times; I am not afraid to admit. I am more often than not extremely quiet. I am almost always very socially awkward, which is why I dislike attending parties, because I will just spend time at the bar drinking alone. Which can be fun to an extent, yes, and then it just gets sad.

Aside from being an avid collector of comics and an equally-as-avid fan of Star Trek, I am a “silent disabled advocate,” and I am never fearful of speaking my mind.

Yet I very much digress.


What do I want in life? What do I desire?


I wouldn't mind dating Jennifer Lawrence, yet we can leave that for another day.


Not the type of answer ya were expecting?


All right, then. Let us reframe the question.


What caused me to become inspired to become an advocate?


And while we are on that topic … why do we as a society have a long way to go in terms of equal opportunity, especially in the field of education?


Well...


When I was growing up in the '80s, mainstream special education in California was incredible. My years in the OH - Orthopedic Handicapped Center at Juana Briones Elementary School in Palo Alto remain to this day the greatest times of my life. I would not be the person I am today without them, and I thank God for what was literally my second family.


The OH was the "hub" of special--ed in the area. Every district would send their disabled students in the morning or afternoon; for therapy, specialized help with homework, or a combination of both. As a result, on any given weekday, the center would see over 40-50 students.


One of our teachers-- a favorite with everybody -- was Paul Arbogast. Sadly, he passed away in 1997 from ALS. The greatest disabled advocate I have ever been blessed to know, he was not even 60 years of age. I miss him greatly every single day. He ran Camp Harmon (a longtime summer camp home for various disabled groups). He made it what it is today. He began lunchtime support groups for us. He never turned down opportunities to be on talk shows or what have you. He had an awesome sense of humor, even in his final months.


He was and he remains, one of my favorite people. Just one of a large, magnificent group of teachers, aides, therapists and administrators who always treated us with respect and never spoke down to us. They taught us, albeit often indirectly, to stand up, to fight and never to back down or remain stagnant. They taught me how to become an advocate and so much more.


The JBOH was not only my saving grace, but the saving grace of countless other students, staff, and families of those students. I “do” this for Paul. I “do” this for them. "We" ought to do everything for them. We learned to start from the grassroots up. I feel as if I have a deeper connection and understanding of the complexities and nuances of special ed than most people.


While it is easy to say with freakish glee that we are working to move forward and get to a place never before seen, it is both ironic and realistic to say that in the case of special education here in California, we are working to revert back to the way things were. When looking at the state of things now, I must shake my head.


Because of Proposition 13 and budget cuts, many disabled students are being mainstreamed in classes which are completely unsuitable for their needs and leads to them exhibiting disruptive behavior in the classroom which is not good for them or the other students. Because the OH at Juana Briones is only able to accept the most severely disabled students, the program is down to fewer than twenty students a year. This is discrimination. Things simply have to change. Students are being denied the opportunity to reach their full potential. This situation also reflects the larger societal problem of poor people being left behind. Disabled students who come from families who can afford to pay for expensive services are much better off than those whose families cannot. While this flawed system has not destroyed who I am as a person, I feel that it has damaged everything which made me into who I am as a human being.


The public is now easily deceived. We now have the Bridge School, which was founded in 1985 by and still run by Pegi Young and Jim Forderer, in Hillsborough. Every year there is a now iconic concert event with ticket sales often bringing in close to and sometimes over $3 million. Only problem? The 501c3 non-profit does not see even a quarter of this money. Live Nation keeps for themselves. (I have spoken to parents and former Shoreline Amphitheatre employees who can confirm my accusations). When I and other individuals have confronted Bridge about this dishonest behavior, we have receive manic and angry responses and rhetoric. It is just as easy to be corrupted as it is to be deceived. Using the facades of charity and the disabled as cop-outs for horrid behavior is nothing short of evil. If we keep on going down this path, I truly fear for our future.


By educating a well-meaning public, by organizing and participating in major advocacy events, we can be the ones to create positive change. It will take time, yes. The problem with most disabled groups is that they are stagnant. They don't have any real long-term vision. I have experienced time and time again, when standing up for causes, people not taking me seriously because I am disabled.


Yet, one must remain optimistic.


How will we do it? How can we do it?


Well ... we get out there. Forge relationships. We must start from the ground up. Change takes time, and if we desire change, we must seek out those who are willing to create, who greatly desire, fantastical change. For there are plenty--plenty of people who are plenty sad, and plenty angry. Everything is connected, and everything is relatable in one way or another. The first key, per se, is to educate the public on “how.”

Every disabled person deserves the types of experiences I was lucky enough to have. Every disabled person deserves the chance to become all that they can be—in grade school, in high school, in university, and beyond.


Let us make it hot, you all, and let us go beyond the basic “march for

k-12 special education ” or occasional blog post about how all disabled individuals are special. Let us get creative; let us be groundbreaking. Let us add a component to the annual March in Sacramento, where we educate both the public and our state officials on the direct, yet seemingly indirect, connections between k-12 special ed and higher education special education, and how more funding for higher education would both directly and indirectly influence this, and how it would greatly benefit everybody. Let us use k-12 as a catalyst.


Ironically, to be blunt, I am quite uncomfortable around many disabled activists. I do not see enough attention being paid to the issues which matter most. I see anger, yet little else. I see a clear separation, between the able bodied world and the disabled one. No attempt to merge the two--to work together, to cooperate, to ignite what often has been referred to as “heart learning.” We can change that. We can be calm; we can be understanding; we can be … relatable.


We can do stuff.


Let us do stuff that has never before been done.

Let us have fun doing it.

The end result will be amazing.


To conclude...


The old saying "we want to be treated like everyone else" is, to put it mildly, crap. Far be it from me to be overly-sensitive about being disabled. Do not just say it and whine about it, fellow crippled people.


Just do it.


Stand - or sit - within the first few rows of a concert by “A Day to Remember” or “August”, “Burns Red” or “Attila” or “New Found Glory.”

Run - or roll - into mosh pits.


Go on hikes in rough open space--even if it takes you a while.


Smile at the insanely hot girl passing by.


Go ahead and flirt.


If you see a great injustice in society, start up a campaign.


Be fearless in that campaign.


God Bless you all, and remember: don't give a crap about what others think.


Be CALM. have FUN.


Stand up.


Do not ever back down.


The end result will be amazing.




Daniel Mart is a student in Cupertino, California.

As mentioned in this essay, he has fond memories of his years being raised in special ed. Mart is the co-founder of Inclusability, an organization whose aim, whose mission, is to go beyond the ideas, the concepts of what a disability club is. Of what people think of when they see the words "disability organization". Taking the concepts in this piece and really promoting and expanding them--altering mindsets which have been so engrained in culture and in society for so many years.

















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