Typed Words, Loud Voices: Review

Review of Typed Words, Loud Voices (edited by Amy Sequenzia and Elizabeth J. Grace)

First, read "Why This Book" by Amy Sequenzia, and get the entire point of the book.

“Because everyone has something to say" and "Everybody communicates. Words are beautiful. Our words have value." (pp. 10-11) Don't need much more than that to get your point across. Her introduction is short and concise, to the point. A bit of the personal story mixed into a question many people are undoubtedly asking, whether their voices count. Of course they do. 

Also read Elizabeth J. Grace's part of the introduction, iterating the point that that "scientific style testing is not a fitting a viable way to hear what we are saying about our own lives and experiences. An excellent way to understand us to really listen to what we have to say." (pg. 14) 

It's important to note that there is a disclaimer: not all these essays are about joy.  Not all these essays reflect disability in a positive light. This doesn't mean you should have pity or less acceptance for disabled people. These essays are published raw and full of their authors' truths.

So who is this book for? Who wrote this book? What visions are in this book? And would I recommend this book to you?

Who is this book for?

This book is for anyone who types. Anyone who types, part time or full time or wants to type, to know that they are not alone. This book is for the people who don't believe that autistic people have voices.

This book is for anyone who wants to learn more about autistic people's voices, typed or not.

Who wrote this book?

A global autistic and disabled community, people who type full or part time to get their messages across. Some authors are as young as six years old. They are autistic or disabled in a way that requires them to use alternative communication. They are girls, boys, men, women, people who identify outside the gender binary. They are in all grades of school or didn't attend traditional school.

What visions are in this book?

Correcting mistaken beliefs. This book has poetry in it (because autistic and disabled people can be poets), prose, memoir and vignettes, and other such writings.

The book's main goal is to correct the impression that people who use Facilitated Communication, or other types of communication, have no voices and no thoughts.

Sometimes, this book acknowledges that being disabled is hard. Being disabled is difficult in this world, especially one that places emphasis on spoken words. Mostly, the book illustrates the diversity of people who use alternative communication, and their lives that are still rich.

Would I recommend this book to you?

Yes, I would. It's written in a blend of poetry and prose and words that make your heart angry that some people would discount typed words. I would especially recommend it if you fall into a category of not believing disabled people's experiences and words.

Dissolving my Pagination Poetry blog into this one

Because this needs to be a slightly more multipurpose blog, imo.

Getting a little tired of categorizing my life into Activism and Not Activism.

someone told me I was expressive compared to this person once

(Crossposted on Tumblr)

I object to being compared to other autistic people like this. I think it’s unhelpful to do comparisons. The saying ‘you’ve met one autistic person, you’ve met one autistic person’ exists for a reason. Using someone else’s so-called expressiveness to justify an argument is not okay. They are not a prop.
Their faculty with words is not in direct comparison to mine.

(withasmoothroundstone I think wrote something along the lines that some people are “more autistic” in some areas to hir, and “less autistic” in some areas, and about the same in others - as in autistic people all share common traits, on varying planes of communication and sensory and other things - by the way, that’s the spectrum, not high to low).

I am not okay with using people as props, though.

And it also makes me wonder: what is expressive? What does the word expressive mean?

Because by all means, people would call me expressive. I have opinions and I have loud thoughts. But by loud I mean colorful, because my faculty on language out loud is not the greatest. I sound crass, blunt, angry, and full of swears.

But my favorite phrase is “I don’t know;” my hands flutter when people make eye contact with me for too long and I can’t think when they stare at me, interjecting placeholder words while I try to articulate. I can put together great presentations when I rehearse and script and have outlines, though. And I get passionate, if I know a lot about it.

But anyway, tl;dr

If your value rests on how well a person speaks, that their worth is directly related to how they present themselves, I question your value of what expressive is. 

#JusticeForKayleb and the school to prison pipeline

At age 11, Kayleb Moon-Robinson is a nearly convicted felon. His crime is kicking a trash can, then being unnecessarily restrained by a police officer, while autistic and black. He's not the only one. Virginia, where Kayleb lives, also leads the nation in putting students through the juvenile justice system.

The rates of the school to prison pipeline and rates of incarceration of black individuals is staggeringly high, including those with disabilities of all kinds. The Civil Rights Division of the Education Department reported in 2014 that “While black students represent 16% of student enrollment, they represent 27% of students referred to law enforcement and 31% of students subjected to a school-related arrest.” Read that again. They are subject to twice the rate of arrest than their actual population within the schools.

The Southern Poverty Law Center reported on Lousiana's record of discrimination. In it, there is a description of a black autistic girl – a 10 year old – having a meltdown in class and climbing out the window and up a tree. The police dragged her down from the tree and handcuffed her to the ground.

And no, it's not because black people are inherently more in need of arrest. They've been arrested as things simple as throwing Skittles. These are things I can imagine a lot of middle schoolers doing. The American Civil Liberties Union has some recommendations on what to do about it for schools, and it is clear that any solution must involve advocates of color.

And often, while disability can be a factor in the school to prison pipeline, disability advocacy focuses on the disability and leaves the race behind as a significant factor. I encourage any fellow white advocates reading this to examine the intersections of racism and ableism.

More

• All Day Justice For Kayleb Social Justice Event
• School to Prison Pipeline Fact Sheet
• Intersected, Justice for Kayleb Moon-Robinson
• Morenike Onaiwu, Justice for Kayleb NOW
• Petition and petition updates for Justice for Kayleb
• Why Does The US Incarcerate So Many People? Al Jazeera America
• Virginia Governor Asks How To Reverse Schools' Staggering Rate of Referrals to Cops and Courts
• Education Department Civil Rights Division: Protecting Civil Rights, Advancing Equity, 2013-2014
• Free Thought Project article on Kayleb
• The Grio article on Kayleb

Disparities in healthcare for the disabled

Health care disparities, boiled down

The issue of health care for disabled people is a heavily multi-pronged issue. In the United States (I know health care disparities are rampant and this is not a solely U.S.-centric topic, but I may follow up with more depending on sources that can be located), many disabled people live in poverty, making it difficult to access health care and health insurance. Barriers are not just economic, but also racial. Disabled people of color are more likely to experience health care barriers. Accessing health care friendly toward transgender people is also difficult.

I have watched people I know struggle with pain because doctors do not seem adequately prepared to interact with disabled people, and almost be denied lifesaving treatment due to disability and weight.* Individuals with disabilities also have symptoms chalked up to their disability. A study notes that “In general, PWD do not feel health care professionals are adequately prepared to treat them, and do not possess the skills to effectively communicate and develop trusting relationships with PWD.” The National Council on Disability reported in 2009 that “the absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers that prevent people with disabilities from receiving appropriate and effective health care.” I have read the stories of many people here refusing to accommodate them, such as informing them they don't “look disabled enough,” or assuming that because they are disabled they have no communication.

In addition, the Disability Rights and Education Fund reported that “PWD of color or who are members of other minority groups are very likely to be encountering instances and forms of “double discrimination” that no single movement is effectively identifying or actively working to address.” For instance, this article covers issues of double-edged swords between hiding pain or openly suffering for black women with disabilities.

Further, in addition to not being prepared to communicate effectively, the economic barriers tend to be massive. In 2009, the CDC released a brief that in all states, people with disabilities cited economic barriers as reasons for not receiving adequate health care. In the same year, the National Council on Disability noted that people with disabilities were not considered a group with significant disparities in health care, which does not encourage action on the part of the government to improve healthcare for disabled people. Action is required on the part of the government to recognize disabled people as a group experiencing health care disparities.

While the federal government released a report in November 2010, Healthy People 2020, which “among its objectives for people with disabilities, Healthy People 2020 includes reducing unemployment, increasing the accessibility of new and retrofitted housing, other issues will need to be addressed by the federal government in order to provide these things, such as banning the subminimum wage for disabled people, as New Hampshire recently did so that employed disabled persons can receive more money, and a stronger focus on community integration, with increased funding for Home and Community-Based Settings.

It's not all on the government, of course. We have to work to end stigma here as well, especially among nondisabled peers. But funding and training for physicians and those in the medical field would go a long way.

*Amanda Baggs, mentioned in the poem, has changed hir name to Mel Baggs and uses sie/hir pronouns.

Abuse of students with disabilities in school (CW: Restraint, seclusion, abuse, police violence)

Recently, near my hometown and current residence, a special educator dumped an autistic child into a garbage can while taunting him. She had a track record but complaints against her were not taken seriously. This is just one recent example in many cases of educational abuse of children with disabilities. While Georgia has stringent laws in place for these, there are no requirements as for what constitutes punishment. There should be.

The U.S. Department of Education Office for Civil Rights reported in 2014:

“Students with disabilities (served by IDEA) represent 12% of the student population, but 58% of those placed in seclusion or involuntary confinement, and 75% of those physically restrained at school to immobilize them or reduce their ability to move freely. Black students represent 19% of students with disabilities served by IDEA, but 36% of these students who are restrained at school through the use of a mechanical device or equipment designed to restrict their freedom of movement.”

Restraint and abuse is a rampant problem for students of color and students with disabilities. Despite states making policy changes, students with disabilities continue to be retrained and secluded at a high rate. Oftentimes for students of color, it results in being arrested for having a meltdown, as is the case of Kayleb Moon-Robinson, or being handcuffed for escaping the classroom and climbing a tree while having a meltdown, and being pulled roughly down and handcuffed and restrained.

Many states have no policies regarding restraint and seclusion, and of the states that do, fewer have state regulations and statutes addressing it. According to the Government Accountability Office in 2009, officials in Illinois stated that “seclusion and restraint cases involving children and adults with physical or mental disabilities typically have low rates of prosecution.” In Georgia in 2014, educator Melanie Pickens got away with cruelty to children with disabilities by using a clause in Georgia state law, O.C.G.A. § 20-2-1001, that would give her immunity if she was disciplining them believing her actions to be in good faith.

Little has also been done to address the problems of common school-to-prison pipelines, resulting students of color being disproportionately targeted for discipline, especially those who also have disabilities, like Kayleb Moon-Robinson, declared a felon at age 11.

Students are being abused, restrained, handcuffed, and secluded against their will. Students with disabilities and students of color experience this at disproportionately high rates. Federal bills fail to push through the Senate. States slowly enact statutes, but prosecution is low. What is to be done?  

Blogging Against Disablism Day 2015: One of the Lucky Ones?

(Please visit http://tinyurl.com/BADday2015) for more Blogging Against Disablism Posts)

I'm one of the lucky ones. I'm one of the lucky ones. Maybe. I do feel invisible. Mostly I feel lucky because I'm about to graduate. Here, have some official statistics of disability in higher education in the United States:

• Students with disabilities represented nearly 11 percent of all postsecondary students in 2008, according to a federal survey.¹
• The graduation rate in 2013 was “approximately 26%, half of the rate of students without disabilities.”²
• The National Council on Disability reported in 2003 that “ Resources in higher educational institutions are often inadequate, leaving disability service units in the position of having to make decisions based upon budgetary considerations rather than upon proven effectiveness (NCSPES, 2000).”³
• The National Center for Education Statistics reported in 2009 that “a few of the barriers cited by institutions as hindering implementation of Universal Design to a moderate or major extent were limited staff resources to provide faculty and staff training on accessibility issues (52%).”⁴
• Since many schools are understaffed, the importance placed on “school disability services offices collaborating with other campus offices, such as academic departments, counseling centers, financial aid, housing, student activities, special events, and career services, to provide the full range of services that students may need” becomes strained.⁵
• Many schools also do not have the proper resources in place to support students with varying psychological health needs.⁶
• In a report by the Association for the Study of Higher Education in 2013 on students with disabilities, it found that “students with disabilities may feel invisible on college campuses.”⁷
  • A solution to this, according to ASHE, is social change: “institutions must also move to create social change in their campus communities. The perception of students with disabilities must change in those individuals who do not identify with a disability.”⁸ It also indicated that “self-advocacy was a large component of their success, but it did not come easy.”⁹

But I'm one of the lucky ones, I'm graduating. I'm graduating. But I still feel invisible.

Because it is a double-edged sword. Being told to self advocate and then when you do, being told that you are hostile. I still feel invisible because I am not considered a minority. Disability is not considered a culture, though we got the disability group on campus into the cultural organization coalition. I do not see myself on campus. I see other people being far more successful academically. I see other people and few people disclose any disabilities on my campus.

I do. I do. I disclose at every opportunity. I tell them, “I'm Autistic,” and I gave speeches in my speech class in 2014 on autistic self advocacy, but I don't think they believed me and my social model of disability. I don't think they believed that I could have meltdowns and shutdowns and not be able to talk sometimes. I don't think they believed that the nonspeaking Autistic community could have a quality of life and want their lives because someone else was presenting on autism on the basis of her cousin being “low-functioning,” a term that is degrading and dehumanizing and ignorant of the facts of autism.

Places of higher learning must create social change. A community where people can disclose.

Places of higher learning need to care and devote budgetary concerns to programming and to having more than one staff person in their offices and concern themselves with more than straightforward academic concerns. Disability needs to be included at every turn everywhere that proclaims diversity and forced to be included in anywhere that does not even try to claim diversity.

Because I say to any place that tries to claim me as a diverse statistic: you cannot and may not, unless you are trying to include me and my disabled peers. I will tell the world you are not diverse in this regard.

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1 Government Accountability Office, “Higher Education and Disability,” 2009. http://www.gao.gov/new.items/d1033.pdf

2 ASHE Higher Education Report, “Disability of College Campuses: An Overview,” 2013.

3 National Council on Disability, “People with Disabilities and Postsecondary Education -- Position Paper,” Sept. 2003: http://www.ncd.gov/publications/2003/Sept152003

4 National Center for Education Statistics, 2009. http://nces.ed.gov/pubs2011/2011018.pdf pg. 4

5 Government Accountability Office, “Report on Higher Education and Disability,” 2009. http://www.gao.gov/new.items/d1033.pdf

6  Ibid.

7 ASHE Higher Education Report, “Disability on College Campus: An Overview,” 2013.

8 Ibid.

9 Ibid.