NAMPWD’s Guest Blogger Edward Heaton: Stupidity Rolls On

Stupidity Rolls On
By Edward J. Heaton

Recently, the New Jersey Disability Pride Parade has made repeated requests for funding to support the third annual parade. Just what the !#$(@#$?! is “Disability Pride” and, more importantly, why should we be throwing a parade for it?

I have a problem with the concept of “Disability Pride” and having a parade for it. The problem I have with the concept is, perhaps, generational. When I was growing up in the 1960s and ‘70s, there was no such thing as “Disability Pride”. What I and my compatriots growing up have pride in was achievement in spite of the disability. This may seem like I’m quibbling over semantics, but disability in and of itself was not something to have pride in.

The concept of “Disability Pride” entails that there is some commonality among the entire disability community. This is certainly not the case. In New Jersey alone, according to the Cornell University 2011 New Jersey Disability Status Report , there are approximately 877,000 persons with a disability in New Jersey. As those of us in the disability community and in the general population are aware, there are thousands of types of disabilities with differing effects on each person. Therefore, where is there a common denominator that denotes “Disability Pride”?

In the disability community itself, the only group that I will acknowledge as having a disability culture are those who are deaf. The reason they have this culture is because they share a common disability that makes it difficult to communicate with the rest of us. Because loss of hearing made communication difficult, sign language was developed, and eventually a whole deaf culture developed around the commonality of severe and profound hearing loss. I didn’t agree with this concept, either, until I worked with a man who was deaf. I once asked him if he would consider a cochlear implant so he could hear his children speak. His response was, “I can see them sign.” It was an “aha” moment. This person was a skilled lip reader who in casual conversations did not use an interpreter. Therefore, I did not realize how much of his cultural identity was built around this statement until I asked him about a cochlear implant.

In the disability community, there is no such thing as a coherent community because of the many types and degrees of disability. Therefore, without commonality, how can there be such a thing as “Disability Pride”?

The other problem I have with the Disability Pride Parade is the misallocation of resources used to produce it. For example, in its latest 990 form, the Alliance Center notes that the expenses for the Disability Pride Parade were $14,796. Total program expenses for the whole year were $370,620. This means that approximately 4% of its total expenses went toward a parade. Wouldn’t that $14,796 be better spent on programs that help people instead of a parade? If I were a funder of the Alliance Center, any future funding that I gave would specify that it must be used only towards programs that actually assist members of the CIL, and not be used in any way to support the parade.

The Alliance has a board member, Millie Gonzalez, who is currently living in an apartment in Perth Amboy due to the fact that her home in Union Beach was destroyed by Hurricane Sandy. In the most recent edition of “People and Families” , a magazine published by the New Jersey Council of Developmental Disabilities, Millie described her struggle in rebuilding her house after Hurricane Sandy. She stated that most of the financial obligations of that rebuilding would fall on her. Personally, I would be the first person to donate $100 to a “Help Millie Get Home” fund, as opposed to a Disability Pride Parade that seems to have no long term purpose or goal.

The last question I have is simply this: Was it really necessary to have an indicted politician speak at the parade? Mayor Tony Mack of Trenton, under federal indictment, spoke at last year’s parade because it was held in Trenton. Don’t the people behind the parade realize that even though Mayor Mack’s administration helped them tremendously with the parade, by allowing him to speak at the parade, stripped them of whatever little credibility they had? Nothing says “New Jersey” like having an indicted politician speak at your parade.

http://www.disabilitystatistics.org/StatusReports/2011-PDF/2011-StatusReport_NJ.pdf

https://www.njcdd.org/images/PFCurrentImages/PFSpring2013.pdf

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7 comments

  1. We would like to clarify the following point about Edward Heaton’s article on nampwd entitled “Stupidity Rolls On.”
    • Contrary to the implication in the article, no Alliance funding was spent to host the parade. The Disability Parade was funded completely through private donations, sponsorship and exhibitors who find value in celebrating pride with the disability community and to promote the belief that disability is a natural and beautiful part of human diversity while generating awareness for our community.

  2. Ed Heaton · · Reply

    No, Carole, I did not imply that the Alliance Center spent money on the Disability Pride Parade. The number I took was from what you reported as a program expense on your Form 990 for the year ending September 30, 2012. Under program expenses, on line 24a, you listed $14,796 in Disability Parade expenses. Nowhere on the 990 is there an entry listing contributions specifically for the Disability Pride Parade. Without a direct correlation between revenues and expenses for this event, one must assume that the Alliance Center spent $14,796 on it.

    Your response also did not answer the question of why you feel that the parade is more worthy of funding than either expanding your programs or helping out specific people in the disability community who have ongoing needs.

    Finally, I posted the column to the NJ Disability Pride Parade Facebook page to facilitate and encourage discussion, both pro and con, about the event itself. Any good idea should be able to withstand discussion and scrutiny. My link was taken down within minutes. Perhaps the Parade’s Facebook page was not the best forum for this discussion, but the vagueness of your reply leads me to believe that you are not willing to encourage a serious discussion of the pros and cons of this event.

  3. Amy Taklif · · Reply

    VALIDITY ROLLS ON: In Response to Edward J. Heaton
    By Amy E. Taklif, M.S.W., L.S.W.

    On June 18th, blogger Ed Heaton wrote a withering piece on this very website regarding the validity of the New Jersey Disability Pride Parade and in fact, of the concept of disability pride in general. I would like to offer my own opinion of these, in the hopes that Mr. Heaton and people who think as he does might better understand the reality of both.

    His opening paragraph vehemently asks: “Just what the !#$(@#$?! Is ‘Disability Pride’ and, (more importantly), why should we be throwing a parade for it?” He goes on to boast that in his own childhood as a kid with a disability, he did not identify with the concept of “disability pride,” because he instead focused only on his achievements “in spite of the disability.” Handily sidestepping the obvious, I won’t point out how both this particular statement and this general attitude place Mr. Heaton’s mentality solidly into the category of a textbook-style “supercrip.” Nor will I point out that by simply utilizing such a word, I am giving credence to the existence of a disability culture with its own set of unique schemata and terminology. I will instead address his contention that the disability community has no “common denominator” such as a language or a specific type or degree of disability or diagnosis as in the Deaf community, and therefore no communality or coherence. What is saddest here is that Mr. Heaton does not recognize what many people intuitively understand: there is a great deal of commonality amongst people across all disability types, regardless of their specific condition or level of assistance, and first and foremost among them is the relegation of people with all types of disabilities into second-class citizen status. We are, as we have heard before, the largest minority. In our society, disability is seen as an inherently bad thing, and people who “suffer from” them as weak, broken and pitiful. And to an extent, I can see how this may happen. No new mother ever heard the words “your child has a disability,” and blew out a breath of relief at this news. No patient at a hospital has ever heard “you’re paralyzed” and did a fist-pump of joy. “Disability,” by its very nature and terminology, is considered a negative on many levels. That being said, the disability community is clearly a positive. Consider: throughout history, people with disabilities across the globe have been murdered, tortured, identified as demons, left in the woods to die. There was no community, because each individual could barely be considered human. People with disabilities have been locked away from the public sight, had “ugly laws” enacted against them and turned their “upsetting public appearance” into a criminal activity, and been experimented upon without their permission or knowledge. Not that long ago, people with disabilities were little more than societal blemishes to be covered over as quickly and neatly as possible, and were not even seen as fully human, let alone worthy of inclusion. Yet within the span of a dozen or so decades, people with disabilities are now seen as partners, parents, lovers, friends. They hold jobs, get married, live alone, and pursue hobbies. They have been recognized as equal citizens in most civilized countries and laws have been enacted to protect their human, civil and legal rights. There are absolutely astounding paragons and leaders of the community who have spent their entire lives fighting for these rights, making sure that Mr. Heaton and all people with disabilities have the right to a life, the right to an education, the right to vote, the right to attend college, the right to be free of discrimination in all areas of daily life, the right to their own maximum level of independence and countless other “rights” that we now take as a given. Men and women like Ed Roberts, Helen Keller, Bob Kafka, Paul Longmore, Justin Dart, Laura Hershey, Harriet McBryde Johnson, and Judy Heumann. People who worked under the “cohesiveness” of a belief system, the “commonality” of a set of ideas and principles regarding how people with disabilities be treated, and acted on them, so that all people with disabilities could not only be included in life, but enjoy it. Does this mean things are now utopic and flawless for people with disabilities? Certainly not. Like any other community, there are dynamic and ever-changing challenges to be met and goals to reach. Yet this doesn’t mean we can’t celebrate what we have achieved.

    Given all of this, I am truly baffled by Mr. Heaton’s seemingly self-impressed comment that when he and his “compatriots” were youngsters, “disability itself was not something to have pride in,” and he therefore sees no reason for the disability community to take any pride in their membership in said group. I have to wonder: what exactly does it take to stir pride in Mr. Heaton’s heart?

    His next paragraph goes on to discuss what he feels is a “misallocation of resources” utilized in the production of the New Jersey Disability Pride Parade. Putting aside the fact that the parade is funded entirely by monies donated specifically for the Parade itself, let’s instead discuss the part where Mr. Heaton pontificates that such resources would be “better spent on programs that help people instead of toward a parade.” For starters, they were not raised for the purpose of a program; they were raised for the purpose of a parade. It’s just common sense that there will be some people who will sooner donate to a celebration such as a parade than to another “bleeding heart program for crips,” as certain individuals would undoubtedly put it. But more importantly, what I would like to highlight here is that Mr. Heaton sounds more like an ignorant man without a disability than an intelligent man with one here. This is tantamount to what many people have heard their whole lives about anything that wasn’t strictly either a basic necessity or a medical concern, and that is: “you have so many other problems, why are you worried about this?” Interpersonal relationships, sexuality, recreation — the list goes on and on for things that non-disabled people seem to think are frills and extras in the life of someone with such a monumental problem as a disability. The horror! — to think that actual dollars might go to an event that celebrates the resilience, the heart and the victories of a community that also needs services! How dare they even consider extra mayonnaise on that sandwich, when they clearly need more meat first? It is precisely this sort of thinking that creates an atmosphere of weakness, need, paternalism, pity and “otherness” in our society. And Mr. Heaton is playing right into it. To be fair, I understand the frustration with limited resources and the desire to make sure practicality comes before frivolity. However, that being said, not every dollar needs to go into the pockets of home health aide companies and non-profit programs, and to say so plays into the “gimme gimme gimme, I need so much” attitude that many people feel folks with disabilities have.

    Finally, I would like to point out that not every group who experiences “group pride” has reached any great accomplishment in order to feel that way. Case in point: American pride. What did you do to “become” an American, Mr. Heaton? Odds are, nothing. You were simply born here. Yet, most people would loudly proclaim that they are “proud to be an American.” Mr. Heaton, how would you find a way to assert this, considering you have no great achievement upon which to hang your American pride? Because unless you are a recent immigrant who actually had to take a test to be here, your only accomplishment was being born where your parents reside. And this doesn’t seem too impressive to me. So what are we proud of, as Americans? We are proud of our groupthink, our history, our shared story, our belief system. Are all Americans the same? Do we all think the same, have the same beliefs, share the same values? In most ways, no. But we are still all Americans, many of us with pride in that fact. So when it comes to the concept of “pride,” maybe is it enough to just share the label and take pride in the similarities just as much as the differences. Gay pride, Phillies pride, black pride; regardless of what group you identify with, there is something in every community that may raise your loyalty. That’s human nature. We are all of us social creatures, and pride our communities and in one another comes naturally. To most of us.

    And as for politicians of any stripe attending the parade… I’ve got nothing to add. I don’t much care for them myself. Though I can see how it would be a smart addition to a parade whose permits are signed by the man you ask to say a few words.

    Disability pride is a real phenomenon. The community is a real community. And the fact that people with disabilities have found a way to be proud of the very things that society holds against them is nothing short of amazing. And I for one am proud to be disabled, to have disabled friends and to take part in the New Jersey Disability Pride Parade on October 4th at 9am in front of the New Jersey Statehouse.

    And there is nothing more satisfying than ending an article with a shameless plug for the things of which you are proud.

  4. Edward J. Heaton · · Reply

    First, I would like to commend Amy on a very well written piece. The passion she displays in the piece serves her well in her personal and professional lives. It does not serve her well here. To keep my response shorter than a small novel, let’s start by removing all the invective and considering the facts.

    In the disability community, there are many substantial issues that need to be addressed, including disability employment, housing, full implementation of the Olmstead decision, etc. Pick one. Work on it. Make a difference.

    The problem I have with a Disability Pride Parade is not the concept of “Disability Pride” in and of itself. I even said that “the problem I have with the concept is perhaps generational….” As Amy astutely points out, “No new mother ever heard the words ‘your child has a disability,’ and blew out a breath of relief at this news.” The point is, what did the mothers who received that news do next? In the cases of all the disability leaders she mentions, and in the case of myself, they fought for all of our rights. Before there were CILs, there were mothers and fathers who really paved the way in the pre-ADA era for those such as myself to succeed as well as we did.

    None of these people, to the best of my knowledge, said, “Hey, let’s put on a parade. What a great idea!” My basic concern here is that of the effect of “bread and circuses.” I fear that the parade distracts energy and intention from the severe challenges still facing our community. And that every dollar and every hour of time spent on such endeavors is a dollar and an hour that does not address the issues the community still has.

    When you can’t make a point through facts, make it with emotion. Amy did that exceedingly well in her piece. I’m not denying anyone their right to have a parade, or have pride in their disability, if that’s what they choose. I choose not to be a part of it. A lot of time was spent by Amy questioning my heart and my motives. Could we please concentrate on the issues? Long after both of us are gone, the issues and the problems will still be the things that are affecting the community. The rest of it is just noise.

    One personal note: I was accused of having the mentality of the “textbook style supercrip.” I have never considered myself a “supercrip.” I did what I did without caring how it was perceived by others. Therefore, I will let others judge just what type of “crip” and person I am.

  5. Mr. Heaton

    Arguing whether or not to expend resources for a disability pride parade may be a ceaseless endeavor: either you have pride or you don’t. For me, personally, I feel pride when I consider how my life might be if I was born “normal.”
    Sure, many doors would have been open and I may have a better job with higher income, a family, greater overall stability in my day-to-day life, etc. Or I may be lying in the gutter, rejected by all, breathing my last. Until we have access to a couple of good crystal balls, perhaps we should disparage disability so quickly.
    For me, disability pride is summed up in a scene from an episode of a TV show several years back called “Beauty and the Beast” (the Ron Perlman version) called “Brothers.” A man with a disability named Charles, raised as a circus freak, is helped to escape from his family and brought to an oasis beneath the city. When the time comes for Charles to cross the threshold he is too scared and assumes even those who dwell in this refuge will reject him as “an ugly
    freak.” Then Vincent, the so-called “beast,” appears. He quietly tells Charles, “There are no freak…here,” pulls back his hood to reveal his lion-like features and lifts a fury welcoming hand. Immediately a bond is formed and they embrace.
    Is this mutual identification with a community about “pride” or a shared misery? Who can really say? What does it matter? What matters is that, deaf, blind, quad, gimpy, emotionally or intellectually disabled or even just “not quite right,” to those up above, we’re all just freaks. That’s why a pride parade is just as important as healthcare, accessible housing, home care, employment, etc. You can offer an entire new world of accommodations and freedoms to our people who’ve been made to feel like freaks. But, after a lifetime of being marginalized, many will not feel worthy to embrace what’s offered. It’s with the knowledge that they are not alone, that there are millions like them, accepting of who and what they are, that they can take the life-saving tools and say, hey I’m as deserving as anyone else! That is the message that’s hollered loud and clear by every other marginalized community when they parade. Why
    not ours?

  6. Reblogged this on pezben and commented:
    Sorry, I meant to say “shouldn’t” disparage disability at line 8.

  7. My late poet friend, Laura Hershey wrote something exactly on topic.

    You Get Proud by Practicing
    by Laura Hershey

    If you are not proud
    For who you are, for what you say, for how you look;
    If every time you stop
    To think of yourself, you do not see yourself glowing
    With golden light; do not, therefore, give up on yourself.
    You can get proud.

    You do not need
    A better body, a purer spirit, or a Ph.D.
    To be proud.
    You do not need
    A lot of money, a handsome boyfriend, or a nice car.
    You do not need
    To be able to walk, or see, or hear,
    Or use big, complicated words,
    Or do any of those things that you just can’t do
    To be proud. A caseworker
    Cannot make you proud,
    Or a doctor.
    You only need more practice.
    You get proud by practicing.

    There are many many ways to get proud.
    You can try riding a horse, or skiing on one leg,
    Or playing guitar,
    And do well or not so well,
    And be glad you tried
    Either way.
    You can show
    Something you’ve made
    To someone you respect
    And be happy with it no matter
    What they say.
    You can say
    What you think, though you know
    Other people do not think the same way, and you can
    keep saying it, even if they tell you
    You are crazy.

    You can add your voice
    All night to the voices
    Of a hundred and fifty others
    In a circle
    Around a jailhouse
    Where your brothers and sisters are being held
    For blocking buses with no lifts,
    Or you can be one of the ones
    Inside the jailhouse,
    Knowing of the circle outside.
    You can speak your love
    To a friend
    Without fear.
    You can find someone who will listen to you
    Without judging you or doubting you or being
    Afraid of you
    And let you hear yourself perhaps
    For the very first time.
    These are all ways
    Of getting proud.
    None of them
    Are easy, but all of them
    Are possible. You can do all of these things,
    Or just one of them again and again.
    You get proud
    By practicing.

    Power makes you proud, and power
    Comes in many fine forms
    Supple and rich as butterfly wings.
    It is music
    when you practice opening your mouth
    And liking what you hear
    Because it is the sound of your own
    True voice.

    It is sunlight
    Wen you practice seeing
    Strength and beauty in everyone,
    Including yourself.
    It is dance
    when you practice knowing
    That what you do
    And the way you do it
    Is the right way for you
    And cannot be called wrong.
    All these hold
    More power than weapons or money
    Or lies.
    All these practices bring power, and power
    Makes you proud.
    You get proud
    By practicing.

    Remember, you weren’t the one
    Who made you ashamed,
    But you are the one
    Who can make you proud.
    Just practice,
    Practice until you get proud, and once you are proud,
    Keep practicing so you won’t forget.
    You get proud
    By practicing.

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