Tuesday, April 2, 2013

Advocacy, Neurodiversity, and a Personal Narrative on Autism

This post is a reprint from Always Intrepid:  Advocacy, Neurodiversity, and a Personal Narrative on Autism, by Alec Frazier


Advocacy, Neurodiversity, and a Personal Narrative on Autism, by Alec Frazier



My Personal Statement on Advocacy

For most of my life, I have been involved in activism of some form or another. My parents had always encouraged me to be independent and they taught me that no one can speak for me better than myself. In my elementary school I was one of the first autistic students and there was a lot of groundbreaking done.

When I was in eighth grade, I received my big break into public policy by testifying successfully before the Colorado state House and Senate education committees on behalf of a law raising funds for special education. Later on, I ended up working on the election campaigns for two of the supporters of the bill, one of whom is now representative Ed Perlmutter.

In New York State at Tompkins Cortland Community College (TC3), a number of things happened. I was a member of the Student Advisory Board, or student government. I was also a member of Residence Hall Council and Residence Hall Judiciary Board. It was also at this time that I discovered that I was a homosexual. While my friends and family embraced me with open arms, my roommates at community college did quite the opposite. I won’t go into details. What was much more frustrating is that to this day, nobody at the community college has acknowledged that it happened, much less taken action. These factors, coupled with family tragedies, made this a very dark time in my life.

Alec Frazier with Representative Kathy Hochul

I was accepted to SUNY’s University at Buffalo on my birthday, June 22, 2010. Since that time, my life has made a wonderful rebound. This past summer, I was an intern for the American Association of People with Disabilities (AAPD), where I got to meet many influential individuals in the field of disability advocacy and self-advocacy. I was also a lobbyist for the National Council on Independent Living (NCIL), and got to meet the representative for my university campus, Kathy Hochul. I even got a standing ovation from JFK’s sister, the Hon. Ambassador Jean Kennedy Smith!

Since then, I have been a periodic youth consultant for VSA, the International Organization on Disability and the Arts. I have also been a contributing author for the Autistic Self Advocacy Network’s Disability Empowerment Project. I am a founding member and the Chair of UB’s Diversity in Disability Planning Committee (DDPC), which is putting on their second annual symposium entitled Diversity in Disability. I am also a National Advisory Committee Member for Autism NOW! and a Student Advisory Council (SAC) Member for the US Business Leadership Network (USBLN).

My Goals for Autistic Advocacy
How different people see us. The man at bottom center is Ari Ne'eman, the first US presidential appointee with autism.

A large challenge facing the autistic community today is that of how to advocate for us. Because autism has only been recognized relatively recently, there are still divided schools of thought on how this should be done.
The largest autistic advocacy organization, Autism Speaks, embodies the cause’s biggest problem. Autism Speaks is run entirely by parents of people with autism and professionals who work with people with autism. Aside from a few token positions, almost no one involved in the running of the organization has autism. The organization’s portrayal of autism is shameful. They show it as a sickness that takes our children away. Many of the people involved with Autism Speaks are pro-cure. That is to say, they believe that autism can and should be cured and if possible prevented. If someone were African-American or homosexual, curing them of their “sickness” would be viewed as unacceptable and in many cases they would be put in jail.
Contrast that with an organization I have been working with called the Autistic Self-Advocacy Network (ASAN). We in ASAN believe that those with autism who can speak out on their own behalf should, because nobody knows what our needs are better than ourselves. ASAN is an organization led by, and for people with autism, although friends, family members and the ever important group of allies are certainly welcome. Our motto in ASAN is “nothing about us without us.” We also reject the common autistic advocacy logo of the puzzle piece because, “we are people, not a puzzle.” A big part of ASAN’s platform is neurodiversity, the idea that things such as autism, various learning disorders, ADD, ADHD, and other classifications of mental difference are just that, difference. In the idea of neurodiversity, these differences are another form of diversity similar to sexual identity, race, and ethnic background.
Two ways of looking at autism. The Disability Model is the way of the past, while the Neurodiversity movement is the way of the future!
So clearly the policy already exists to address the challenge presented by misconceptions such as those in Autism Speaks. The problem then lies in getting the word out there. Advertising is only part of the solution, but so is being better informed about your own rights and those of others. To better inform people, I am taking part in a number of initiatives. I have been a contributing author for the ASAN’s Disability Empowerment Project. I am a founding member of UB’s Diversity in Disability Planning Committee (DDPC), which is putting on a symposium entitled Diversity in Disability. We hope that this symposium will become an annual event with guest speakers, exhibits, panels, and more. In these ways, I hope to bridge the gap between the conditions in my personal statement and the goals in this essay.


Thoughts on Identifying as Disabled

It is my belief that those with disabilities understand the challenges facing the disabled community much better than those without disabilities. That said, allies are a very important group for our advocacy. Is because of this dichotomy that one of the largest challenges for people with disabilities is advocacy groups that first of all do not consist of people with disabilities in key leadership positions, and second of all which claim to reflect the wants and needs of people with disabilities without actually doing so.

In Front of the White House while Serving as an Intern for the American Association of People with Disabilities (AAPD)

The good news is that the members of the disability community in general, and the autistic community in specific, have recognized the need for self-advocacy, as well as advocacy for the disability community by people with disabilities. In addition to relatively older groups such as the National Federation for the Blind, there are cross-disability groups such as the American Association of People with Disabilities (AAPD), specialty groups such as the National Council on Independent Living (NCIL), and newer groups dedicated to advocating for more recently recognized disabilities such as the Autistic Self Advocacy Network (ASAN).

In my opinion, I feel I can relate to the diversity of autism because although I am hyper aware of the fact that I consider myself neurodiverse, there are plenty of people on the autism spectrum and with other forms of neurodiversity who are not like me. The goal of the groups mentioned in the previous paragraph then becomes uniting people with different forms of neurodiversity and disabilities and people in different places on the autism spectrum in order to create one cohesive whole body that can fight for itself and its rights. People with disabilities are very proud group of individuals who are growing more and more vocal all the time. It is through self-advocacy and advocacy by like-minded people that I feel the most can be accomplished.

When it comes to disability rights in general, I tend to admire people with disabilities who have worked to change the world for the better as opposed to those who claim to do so but do not have disabilities. Franklin D. Roosevelt may have hidden his disability, but he’s a true example of triumph over the most daunting of circumstances. Justin Dart Junior was a man in many similar situations to FDR who pushed forth the ADA as a great advancement in American policy towards people with disabilities. I was honored enough to meet Justin Dart’s widow, Yoshiko and many of his contemporaries during my 2011 summer internship with the American Association of People with Disabilities. In terms of autism rights, I once again tend to idolize those with autism as opposed to without. I admire and have met Temple Grandin a few times, although I do admit that her life of advocacy is limited quite a bit by her chosen field of work (animal husbandry). I have done business with Ari Ne’eman, once again as part of my internship, and also as resource officer of my school’s first annual Diversity in Disability Symposium and also as a member of the Autism Campus Inclusion Project. I am honored to not only call him my idol, but also my friend. It should also be noted that I admire many people in history and public life who probably had or have autism although it is either not public or not diagnosed. These people include president and statesman Thomas Jefferson, genius Albert Einstein, and businessman and philanthropist Bill Gates.

Thoughts on Identifying as Autistic

Little Alec
I was diagnosed with autism and Asperger’s syndrome at a fairly young age when it was extremely uncommon in the United States for people to do so. I credit this to the fact that my mother is from Germany, where diagnosis has been going on for much longer. My parents always knew from my birth that I was different from the neurotypical. They also differed from many other parents I have encountered who have children with disabilities in general and autism specifically in that they talked to me about it and still do. Discussion about people who have disabilities or neurodiversity within in the family is not only healthy, but to be encouraged. I think it is a shame that many shun discussion on the matter. From the moment I became aware of my autism and other neurodiversities, I have felt proud in identifying as such and taking part in advocating for my own rights and those of others. For as long as I can remember, I have had a key role in making decisions on topics such as therapy, medication, and accommodations. I currently identify as a person with autism and Asperger’s syndrome, having OCD, bipolar disorder, ADD, dysgraphia, sensory integration disorder, and facial and digital atonia. But most importantly, I identify as me!

Because of my early diagnosis with autism and Asperger’s syndrome, the autistic community had not coalesced very well until fairly recently in my life. It has always shocked me how many misconceptions there are about people with autism. Others have said that I can’t be autistic because I like to hug people or because I can talk or because I’m not completely introverted. As my life goes on, more and more people who meet me have absolutely no clue that something is “going on” until they either spend a bit of time with me or I inform them of the fact. I have always hated when people claim to speak on behalf of those with autism without having a clue about it or taking their view of autism from a limited and/or unrepresentative sample. I hate groups like Autism Speaks. Although many of their goals are noble, they do not allow people with autism to represent themselves very well within their organization and public face, and provide an inaccurate depiction of those with autism as helpless and in need of pity. Instead, I choose to ally myself with the Autism Society and especially with the Autistic Self Advocacy Network, due to the degree to which they—or should I say we—accurately portray autism and include people on the spectrum in decision-making.

Goals

In my opinion, advocacy is when a person or a group of people work to put forth and enact an agenda on behalf and for the betterment of themselves or others. To me, a legacy is a lasting impression that a person or a group of people leave on the world. To combine the two, the legacy of an advocate must be a lasting impression that a person or group of people leaves on the world on behalf and for the betterment of themselves and others. Now I can better understand the attitudes and actions of others, societal norms and changes, and how these two factors impact my personal world.

My legacy pertains to advocacy on the behalf of people with disabilities. My own interest in advocacy has been born of necessity and genuine interest, primarily manifesting itself through self-advocacy. Self-advocacy refers to: an individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights. It involves making informed decisions and taking responsibility for those decisions. According to The Museum of disABILITY History in Buffalo, New York, self-advocacy on behalf of people with disabilities is extremely recent by relative terms. In the beginning, people who considered themselves as educators and scientists were the primary guiding force on the treatment of people with disabilities. A bit more recently, friends and family became involved. But self-advocacy is in some cases only beginning to gain traction. For example, take the autistic community of which I am a member. The largest and most vocal “advocacy” group is Autism Speaks, which is composed almost entirely of friends, family, and educators claiming to speak on the behalf of those with autism, all the while treating it as a disease. A much newer group that I can actually get behind is the Autistic Self Advocacy Network (ASAN), a group created and run by people with autism for people with autism, which treats it as a difference and not a disease. A class reading I once had, Social Construction of Disability, states that “disability is socially constructed through the failure or unwillingness to create ability people who do not fit the physical and mental profile of ‘paradigm’ citizens.” Therefore, self-advocacy and the viewpoints of people with disabilities themselves is essential to disability advocacy and advocacy as a whole.

Advocating for the Autistic Self-Advocacy Network (ASAN)

Given these views on disability rights advocacy, I have set myself a goal to pursue this field both in my personal life and in my career. My biggest hope is to end up working for a national level disability rights group, such as the aforementioned Autistic Self-Advocacy Network (ASAN) or The American Association of People with Disabilities (AAPD). One of my strengths is that I already have many connections in the disability rights community, although I wish to maintain and cultivate them even more. It should be noted, however, that finding work—especially in the non-profit sector—is difficult in today’s economy. What will also be challenging is finding out exactly how to parlay my personal experience as a disability rights self-advocate into a career working for and with others. The good news is that I am well on my way to doing so already.


This month, April, has typically been designated Autism Awareness Month by most organizations that deal in the matter. These organizations are dominated by parents and professionals who do not have autism. These organizations teach that it is appropriate to mourn for autistics, to pity autistics, to cure autistics, to speak for autistics. Do not. Do not do any of this. Do not mourn for us, because we are not lost. Do not pity us, because we are not unfortunate. Do not cure us, because we are not broken. Do not speak for autistics, because we can speak for ourselves. Do not observe Autism Awareness Month. Observe Autism Acceptance Month. Do not give to patronizing organizations such as Autism Speaks. Instead, give to an organization run by and for autistics, the Autistic Self Advocacy Network. I am autistic, and I am just as much of a human being as you.

Autism Acceptance (Image by Autistic Self Advocacy Network)