Civics of Disability

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I am in alumni of The International Thespian Society Troupe #5029. I have been participating in theater since I was 5 years old and I’ve been participating in educational theater in public schools since elementary school. I am also a dramaturge and an actor and director. I’m an alumni of the Delta High School Program, in the State College Area School District. I am also the head and owner of an organization dedicated to producing community theater, and I am an amateur theater educator in the community.

As a person who has been living with cerebral palsy since birth and uses a wheelchair for mobility, and as somebody also struggles with anxiety and mental health, the impact of theater on my life cannot be overstated. Educational theater has given me opportunities that I would have never had without it. It has contributed to my social, intellectual, and emotional development, helped me to be more empathetic, enabled me to take on leadership roles, and develop skills that will be useful for the rest of my life.

The bonds that I have made in theater are extremely important to me. It has been a refuge in good times and bad, and has allowed me to truly and fully embrace being my most authentic self, even though navigating life as a person with a disability permeates every aspect of my life, and it will never be easy.Theater has led me towards a path of self acceptance, and what I’m able to contribute in a theater environment doesn’t take away from my limitations and daily challenges, but, more powerfully, the reverse is also true, and theater has inspired me to face these challenges head on, because it is an environment where my contributions are at their most meaningful.

For the reasons stated above,  I am passionate about ensuring that all children have an equal opportunity to obtain a high-quality education through the distribution of targeted resources that can help close the achievement gap between minority and nonminority students, and by including enriched and accelerated educational programs in all well-rounded subject areas— including theatre. Also important is the continued improvement of buildings and infrastructure in public schools

This is vital, as I know from experience how hard it is to perform and learn in facilities that pose health and safety risks to students and staff, as I spent the majority of my middle / high school career in a facility that was not accessible in any way, and was over a hundred years old. This space was full of stairs, and had no ramps, which meant that I had to be physically carried up the stairs to perform.

Through a talented team of students, parents, family members, staff, and administrators we made it work, but we shouldn’t have had to. I tell you this not to discourage anyone or encourage guilt but to encourage change. I write  here today on behalf of any disadvantaged child, but specifically children with disabilities and those who care for them. I do this because I truly and emphatically believe that I would not be who I am today without theater, and that no child should have to go through what myself, and those around me went through to share this life-changing experience.However, because my school district is so privileged, I spent the latter part of my high school career between two brand new buildings that were part of a $137 million construction project, which was a massive improvement on various fronts, including accessibility.

Even though my school district has made important efforts and steps forward to make the building more accessible and inclusive and to coordinate with people with all kinds of disabilities, it is still imperfect and has problems and barriers.This just goes to show even if a child’s school is not a historic one, like the one that I was previously in, and is very new and well-funded, that doesn’t mean that other supports and funding would not be extremely helpful and beyond important, although, for obvious reasons of course high- poverty school districts should always have priority and focus, and my experiences are not at all comparable to what other people have gone through poverty-ridden school districts, so I will not be doing so.

But, the question then becomes if I, a very privileged child from a very privileged school district experienced a multitude of challenges and trials and suffering relating to the accessibility of education and of buildings themselves, how much more will an underprivileged child and their family have to suffer and go through in an underprivileged school district to even attempt to have something resembling the well-rounded education then I have been privileged to receive.

If any of what I have written about in this post speaks to you beyond the lookout for a documentary and podcasts from now until 2024 and beyond at mollynookfilms.com. I have co-created this first chapter of a planned docuseries with my creative partner Matt Wilkinson, and I can’t wait to share it with all of you.

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In the aftermath of the lawsuit, as well as during the time in which the proceedings were taking place, Judy received a lot of letters from fellow disabled people, who share their stories of discrimination and messages of support. Because of the sheer volume of letters, Judy and other disabled friends decided in 1970 to found a Disabled In Action, which is an organization that exists to this day focusing on civil rights and advocacy for people with disabilities.

Notably, it was initially called Handicapped In Action, but she disliked the name and Lobbied passionately to change it. As discussed in my post on language, that term has a negative connotation evoking a beggar, and putting their hand to their cap to ask for money. This passive image which reduces disable people to objects of pity clearly did not suit the organization, especially as it was so focused on providing people with disabilities a political voice for action and agency which we have so often been denied through political protest.

One of DIA’s most notable actions during this time was to organize an event in response to President Richard Nixon’s vetoing of the Rehabilitation Act of 1973, which he did twice in October 1972 and March 1973, although these versions were early. This sit in took place in 1972 in New York City on Madison Avenue, and the 80 people who participated managed to stop traffic, and bring attention.

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Ed Roberts, another massively activist with a disability and cofounder of the World Institute on Disability asked Heumann to move to California to work for the Center for Independent Living, for which she served as the deputy Director from 1975 until 1982, and as an early insignificant part of the Independent Living movement she was partially responsible for the implementation through legislation of programs which serve, by one estimation, 8 million children and adults with disabilities. Some of these programs included special education, disability research, vocational rehabilitation and, of course, independent living.  As with all of her activism, these material changes improved quality of life for many people with disabilities, with a particular focus on education, research, autonomy  and learning.

In 1974, while a legislative assistant to the chairperson of the United States Senate Committee on Health, Education, Labor and Pensions, she was one of the major architects of what would become IDEA, or Individuals with Disabilities Education Act. It was introduced into the Senate in 1989, and signed into law by President Bush in 1990. According to the Department of Education website:

“The Individuals with Disabilities Education Act (IDEA) is a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children.

The IDEA governs how states and public agencies provide early intervention, special education, and related services to more than 7.5 million (as of school year 2020-21) eligible infants, toddlers, children, and youth with disabilities.” It also ensures that they will be provided this education until the age of 21, starting during age 3, with early intervention being authorized under Part C for infants and toddlers from birth to age 2.

 

Judith “Judy” Heumann was born on December 18, 1947, in Philadelphia Pennsylvania. Her parents had fled to the United States around the time that Hitler was rising to power, and later became orphans of the Holocaust. At around 18 months old, she contracted polio, and as a result was a wheelchair user for most of her life. A paraplegic, she was instrumental in the development of major  disability rights legislation, particularly in America, was a founder of the disability rights movement, and was considered a towering figure internationally in the realms of disability, education, disability representation and various other fronts. She is often called the “mother” of the disability rights movement. She died on March 4 of 2023. Famously, she said that “disabilities are not problems to be solved.” She also says in her memoir that she never wished to not have been born disabled, which is a sentiment that many other disabled people, including myself, relate to.

When Judy was five, and attempting to be part of kindergarten, she was told by her school principal that she was a fire hazard. She did not attend school until the age of nine. From 4th to 8th grade, she attended a New York special education program. When she entered high school, her parents had to band together with others after learning that there were no accessible high schools in New York Her first taste of freedom came during camps intended for people with disabilities, at which she later became a counselor, which planted the seeds for the disability rights movement.

This is explored in the quite excellent documentary Crip Camp, which deserves a blog post of its own, but for now I’ll just say that it’s free on YouTube, and I would encourage you to watch it. She received her bachelors in 1969 from Long Island University in speech and theater, minoring in education, which is pretty cool as a theater major, although she studied to speech therapy. Well there, she conducted disability rights protests as well. She received her Masters in public health from the University of California, Berkeley. Despite passing the necessary exams, she was denied by the New York City Board of Education in her application for a teaching license. The board stated that this was for reasons explicitly to do with her paraplegia, and the fact that she couldn’t walk.

A disabled friend who was a freelance reporter at the New York Times convinced another reporter to write an article about her situation, and the fact that she had been discriminated against. Bolstered bolstered by public support and legal representation, she sued the New York City Board of Education in federal court, and the judge presiding over the case was Constance Baker Motley, who was the first black female federal judge.

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When it became clear to the Board of Education that they were going to lose, they settled out of court and granted her her teaching license. She tried for three years, and was the first wheelchair user to teach in New York City, and at the elementary school which she attended, becoming the first ever disabled teacher at the school.

Folks, as per usual, I know that you probably have some questions after having seen the title, and they’re totally normal, on several levels. That’s what I’m here, by my own free choice, to do. To explain some stuff, and hopefully answer your questions. To that end, then, a quick note about language:

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In some of the American and international disability community, “Crip” is a reclaimed term, often used to affectionately or self-deprecatingly refer to others including oneself in relation to one’s disability. For me, it’s a way of reclaiming power, and although it makes others uncomfortable, I find it funny. I’m happy to have conversations with those inside my community, and even educate those outside, but while your feelings are valid, it’s not personally your place to be offended.

This applies to other minority communities, and their use of language as they see fit as well. I only really feel comfortable with my family or other disabled people using it in and affectionate and playful way, as that is what it feels like to have it used within that context, for me. I understand it for others it may carry different and much more upsetting connotations. Language evolves, and I think it’s important to center the voices of those that language most powerfully effects, and while  I’m not advocating for censorship, I am advocating for empathy and sensitivity for all parties. Not only does the reclamation of this term have its roots in the disability rights movement of the 60s, which will talk about more some other time, it also impacts the way that we as citizens and human beings interact with each other.

Disability scholar Kirstin Marie Bone argues that the term and crip studies, a subset of queer theory in general creates a divide within the community, harming more than helps, and within academia help to privilege those who are visibly disabled, and who are privileged in other ways, i.e., white and male, straight etc. such as myself, for example. It is worth noting, however, that many influential scholars within crip studies, are black and / or queer and have often been ignored..She writes about this particularly in relation to those in academia. She also charts the history of the term, way more thoroughly than I have here.

Although I am speaking more about individual usage, rather than in the context of praxis, I am sensitive to this criticism, and I’m continuing to evolve. Also, in relation to these evolving ideas, there are several things to keep in mind. One, the community or communities is not a monolith,as Sami Schalk argues that this can actually help to generate conversations around the intersections of race, queerness, and disability.

There’s a lot to think about there, and I might simply change my mind.

There remains a long-standing debate within disability communities as to whether person first or disability first language is preferable. For example, person first language means that I will refer to myself as a person with a disability, rather than a disabled person, which some which some feel diminishes the societal impact and importance of existing as disabled continues to have. It’s also what I was raised to say by my parents, so that ingrained habit has an impact. The fact that person first language has, at points been a “main stream”, piece of language has been offensive to some, as they feel it is a form of respectability politics, intended to make able-bodied people feel more comfortable, or that it softens the impact of having a disability societal week, and so it is an important active resistance to center it.

Personally, in theory, I tend to prefer person first language out of the feeling that it centers the person, but I also have to agree the person first language can be used to soften things too much, and so use both interchangeably. This could be a whole blog post in and of itself. Terms that are almost universally hated include, “differently abled”, as very few in the community tend to actually use it, and it feels as if it was generated by committee by well-meaning white progressives who wanted to make themselves feel less uncomfortable, and to be more equitable.

 

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This is so much the case that the Paralympics has put it on a list of terms not to use recently, and on top of that 99.999% of disabled people I know never use the term. Handicapped is also generally out of fashion, except to refer to a handicapped parking space, as that’s what the sign says, because identifies begging and the origin comes from hand to camp which has a myriad of offensive implications. All this context is at least somewhat necessary to talk about the 504 sit in, #CripTheVote, the ADA, and “crip time”, media representation, comedy universal design,, etc. which I hope to talk about in future weeks, as well as the medical versus social models, and perhaps personal faith, and the capacity contract.

Put simply, folks, be conscious about your language and how you use it, because words mean things, and how you say things matters. It is important.

 

You know, occasionally as a Pennsylvanian with a disability who is often frustrated with the way that local, state, and federal government deal with issues surrounding people with disabilities in various capacities, I am very proud and somewhat hopeful, despite incremental progress and imperfect solutions. In September and October, I experienced two of those precious moments. The cause for my joy was Transformation to Competitive Integrated Employment Act, which is a bipartisan bill introduced in 2021 that is currently in the Senate, endorsed and partially spearheaded by Pennsylvania senator Bob Casey, and the Subminimum Wage to Competitive Integrated Employment fund.

Why are they so important?

How did we get here?

Why are they worth celebrating?

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It all begins with the Fair Labor Standards Act of 1938, which established many important precedence’s around child labor, and established a minimum wage. The trouble is with a section of the act, 14C, which allows places of employment they get a special license to pay disabled people subminimum wages, i.e. below the minimum wage. This is based on their productivity, and there is no floor for how little they can be paid. The president said by these laws means that disabled people are the only class of citizen that you are allowed to pay a substandard wage to based on an indelible trait. However, it is important to keep in mind that particular types of workers, like those who work in agriculture, prisoners, or tipped workers how are within a system which systemically discriminates, and is set up with that purpose in mind.

In many ways, this law was not designed maliciously, as it was intended to help ease the transition back to normal work for disabled soldiers returning from world wars. Another important component of the system, which is still partially in place today in certain states is sheltered workshops, which are employment centers designed only in specifically for people with disabilities, like the aforementioned soldiers, although today they’re made up of people with intellectual or developmental disabilities in the majority of cases. They were intended to serve as a stepping stone so that people could then transition. Only 5% end up doing so, according to the most recent report.. The average wage is $3.34, according to another recent report and overall 100,000 Americans with disabilities makes $7.25 an hour or less.

The bill that I mentioned would require the Department of Labor to award grants to businesses and government agencies to help them transform the way their businesses are run, and to require them to assist and provide oversight in this process. It would also abolish subminimum wages certificates, with a phasing out process of five years.

Additionally, the grant from the Department of Education’s Rehabilitation Services Administration awards $167 million to state Vocational Rehab agencies, in states that have not already phased out subminimum wage to work towards transitioning people with disabilities to jobs that pay competitive wages, and are “integrated”, meaning that in contrast to sheltered workshops, they are not solely intended for people with disabilities. Maybe we can have a token able-bodied co-worker as a treat 🙂 /s. Now that’s worth celebrating!

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Hello and welcome to Civics of Disability, where I will be writing about issues affecting people with disabilities in America in a civic context. Speaking of context, here are some things set a important to know about me in particular, in the situation of adults with disabilities in this country in general for the purposes of understanding this article.

I have a disability called cerebral palsy, which encompasses a wide spectrum of experiences for many people, but for me, it means that my movement is severely limited, and that I am a full-time wheelchair user for mobility reasons, who requires full-time care from an aide. I am also a full-time Penn State student, although I’m not on campus all of the time, who is double majoring in English and theater. I’m with the US federal government would consider a DAC, short for disabled adult child, which means that the Social Security administration defines me as such because I meet a particular set of conditions, which are as follows: “The Disabled Adult Child (DAC) — who may be an adopted child, or, in some cases, a stepchild, grandchild, or step grandchild — must be unmarried, age 18 or older, have a qualified disability that started before age 22, and meet the definition of disability for adults.”

Essentially, they importance of being a DAC does not necessarily primarily have to do with benefits or monetary compensation for being disabled, when you come from a more economically privileged background, as I do, or being “on disability”, but rather being on SSDI or Social Security Disability Insurance, which ensures access to Medicaid and Medicare, which is extremely flawed, but is hypothetically supposed to cover procedures, doctors appointments, treatment, equipment, aide coverage etc.

You’re probably beginning to wonder what any of this has to do with marriage equality. Well, here it is: President Biden recently signed the landmark Respect for Marriage Act, which protects civil interracial and same-sex marriages at the federal level. What it doesn’t protect is inter-abled marriage, which is a marriage where one partner has a disability and the other does not.

Currently, the way the law works is that if a DAC marries an able-bodied person,  or in fact any person, they lose federal benefits, and consequently Medicaid. This legislation it was an antiquated relic from a time when adults with disabilities, particularly “disabled adult children” would not have been considered “marriage material”, because of stereotypes and infantilization. To put the scope of this issue into context, according to the latest report from the Social Security Administration, there are 1,142,699 Americans receiving DAC benefits.

They would be penalized for marrying someone, which is bald faced discrimination.  The Marriage Equality for Disabled Adults Act has been introduced by Democratic Congressman Jimmy Panetta, who represents the 18th District of California to the House of Representatives, which is a step in the right direction. The bill is colloquially called Lori’s Law because this discrimination was brought to the Congressman’s attention by Lori Long and Mark Contreras, who have been waiting to get married because of the current law since Mark proposed in 2016. For their sake, and for mine, I hope they can get married without facing any penalty soon.

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