Tuesday, April 10, 2018

“Neurodiversity Is Dead?” Ion think so. Letter to the Mad In America Editor.


(Image is an autism acceptance word cloud of multiple colors. Source: unknown)




Today I wrote a letter to the editor and the president of “Mad in America” about an ableist and disturbing article that they published on their site.

Here is what I wrote:

“Dear editor,

I am writing to express major concerns over your recent piece, “Neurodiversity is Dead. Now What?” Aside from the numerous inaccuracies it contains, it is a gross misrepresentation of neurodiversity and Autistics in particular. 

I’m a Black Autistic woman (born to African immigrants) who was diagnosed later in life. I am also a parent of both Autistic and non-Autistic children. None of my children are “Aspies” and in fact one has an intellectual disability. Others have speech impairments. My concerns are not limited to one particular “type” of Autistic. Human rights are for EVERYONE. That’s what neurodiversity is about.

Ms. Hiari conflates things in a manner that is extremely problematic. Neurodiversity is not anti-growth. We ARE anti-eugenics. But not anti-support.

There is no fault nor shame in needing and seeking respectful, meaningful supports and treatments for incontinence, self-injurious behavior, migraines, aggression, cognitive challenges, sensory differences, seizures, GI problems, or any host of co-occurring diagnoses a person might have. 

Additionally, as someone who is both Black AND of DIRECT, immediate African heritage, I am extremely bothered by the implications of the remarks about race the post makes - and how that plays into already existing, biased, discriminatory perceptions of people of color. 

As a part of the Mad Pride movement, I am bothered by this attack on the Autistic community and I am saddened that you all apparently endorse these troubling beliefs. 

I believe a retraction and public apology is in order. I don’t expect it to happen, though, unfortunately.”

I received a reply from the Mad in America president this afternoon. As I have not sought permission to post his reply to me on a public platform, I will not do so. (He was cordial enough.) However, neither his assessment of the situation nor his reply itself sufficiently addressed this problem. I’m disappointed, but not surprised.

I have other matters to attend to. I have a sick child; I have dinner to prepare; I have work that needs to be taken care of. There are people in crisis within my community (Autistics of color) who are in urgent need of support and attention. I cannot afford to squander any more spoons over this article. I tried; I failed. It’s still up and apparently its author and the MIA editorial team feel it deserves to stay up regardless of the way it mischaracterizes and stigmatizes me and people like me. I can’t change their minds and their hearts. But hopefully I can change that of others. So while I think this is a matter worthy of attention, I cannot deal with this any longer. So I am going to share with you my response to the editor’s reply to my email, and then I am going to leave this in my friends’ and colleagues’ capable hands to address. And in God’s hands too...

My reply is below:


Thank you for your prompt reply to the email I sent expressing my concerns over the “Neurodiversity is Dead,” article that you published on Mad in America. 

You stated that Twilah’s piece met your editorial standards of “trying to envision and create a more humanistic, supportive way of thinking about ‘psychiatric’ difficulties and differences, and thus about providing support/help to people who may be struggling in this way,” 

And also that 

“...we want to be open to diverse opinions about how to create a more humanistic, supportive  way of thinking (and of care).”


Humanistic can be described as: “having a strong interest in or concern for human welfare, values, and dignity.”

Supportive can be described as: “giving support; providing sympathy or encouragement; providing additional help or information

Support can be defined in this manner:

“to bear or hold up (a load, mass, structure, part, etc.); to serve as a foundation for; to sustain or withstand (weight, pressure, strain, etc.) without giving way; to serve as a prop for; to undergo or endure, especially with patience or submission; to tolerate; to sustain (a person, the mind, spirits, courage, etc.) under trial or affliction; to maintain (a person, family, establishment, institution, etc.) by supplying with things necessary to existence; to provide for; to uphold (a person, cause, policy, etc.) by aid, countenance, one's vote, etc.; to back; to second; to maintain or advocate (a theory, principle, etc.); to corroborate (a statement, opinion, etc.); to act with or to second (a lead performer); to assist in performance.


Rereading the post, and most specifically the last two paragraphs that you referenced in your reply, I am very confused how you and your staff came to the conclusion that her post was “also setting forth a humanistic vision of what might be possible.”

I have quoted the last two paragraphs of her post below (in italics). Beneath each section I have referenced portions of a position statement from the Autistic Self-Advocacy Network. I do so not to imply that ASAN is the “voice” of all proponents of neurodiversity as ASAN certainly has its critics, and they likely have valid reasons for their criticism. But the policy statement is a good, easily accessible compilation of information and I believe these statements at least are generally aligned with the concept of neurodiversity as it pertains to Autistic people on ALL parts of the spectrum. 

When I read this, it is clearly which view is advocating for a “humanistic and supportive” perspective...not Twilah’s.


It begins below.


I propose that autistic people move beyond tyrannical groupthink. 

(My commentary) Some of the terms used to describe tyranny, from which tyrannical is derived, include: “cruel, oppressive, harsh, unjust, arbitrary.”

(My commentary) With regard to groupthink, a formal definition is that of “a group that makes faulty decisions because group pressures lead to a deterioration of ‘mental efficiency, reality testing, and moral judgment.’ Groups affected by groupthink ignore alternatives and tend to take irrational actions that dehumanize other groups.”

(My commentary) Neither of these are “humanistic and supportive” ways to describe others.

We should balance promotion of our talents and skills with honest acknowledgements of our environmentally induced challenges. 

“There are real challenges associated with autism and other neurological differences. The social model draws a distinction between the underlying condition, which exists regardless of cultural attitudes, and the disability, which consists of everything that goes into society’s representation of the condition. In advocating recognition of the civil rights and dignity of Autistics and others with disabilities, we are not overlooking the existence of such challenges. Rather, we are seeking to create a world in which all people can benefit from whatever supports, services, therapies, educational tools, and assistive technologies may be necessary to empower them to participate fully in society, with respect and self-determination as the guiding principles.”


We should make room for more perspectives. 

“When the message of autism awareness becomes one of stigma, dehumanization, and public hysteria rather than one of civil rights, inclusion, and support, we face a grave threat to our efforts to be recognized as full and equal citizens in our communities.”


We should support more research into the environmental risk factors for autism so that the most incapacitating presentations can be prevented. 

“More research is needed in areas such as communication, service delivery, education, and community supports that will have practical applications for improving the quality of life of Autistic people and our families. Autism research grants in recent years have gone mainly toward genetic and other causation-oriented studies with potential eugenic consequences, while studies focusing on educational practices, assistive technology, best practices in providing services and supports, and effective supports for community inclusion have received far less funding. These skewed priorities are unacceptable.”

We should also support more research into modalities that can heal the most severely disabled among us, or any among us who choose healing. 


“No neurological type is superior or inferior to any other. We do not discriminate against or exclude any Autistic person because of their diagnostic category, support needs, or disabilities. We oppose the practice of separating Autistics into high- and low-functioning groups, which incorrectly suggests that people function at the same level across all areas. Each of us has a unique set of skills and challenges; a person who requires assistance in one area does not necessarily lack ability in another. Functioning labels significantly downplay the uniqueness of each individual, leading to artificial and inaccurate classifications that can cause Autistic people to be denied either services or opportunities. The Autistic Community includes all people on the spectrum regardless of their diagnostic category or their support needs.”


We should move towards unity with the rest of the human race rather than division, by emphasizing our humanity over our autism.

“Like any other minority group, we have the right to respectful and equal treatment in all aspects of society. Although offensive depictions of autism and disability are not the only barrier that must be confronted in the struggle for inclusion, quality of life, and opportunity for all people with disabilities, the issue is a significant one because cultural perceptions shape the reality of our lives. By challenging harmful and inaccurate representations of autism and disability, we can advance a broader and more effective agenda for our community as we seek to bring about a world in which all people with disabilities are fully included and accepted in school, at work, and in society at large.”


That’s the end of that paragraph. Before we go to the final paragraph, let’s revisit what Twilah wrote in the paragraph immediately preceding this one:

But we have to recognize that not all environmentally modified brains turn out well. Some of us can’t perform the fundamental activities of daily living independently. Some of us have are caught in a loop of sickness and self-harm and engage in biting or other types of violence against other people.


Let’s contrast that with the policy statement, which declares:

“The United States Supreme Court has declared that every American with a disability has the right to live in the most integrated setting. This requires that sufficient funds must be made available for services and supports to enable community participation.

Many therapies and products for Autistic children and adults are helpful and should be made more widely available, such as physical therapy, speech therapy, occupational therapy, and augmentative and assistive communication technology (including supported typing, facilitated communication and other methodologies that support communications access).”

Here is Twilah’s final “I know I just crapped all over you, but ‘can’t we all just get along!’” ending paragraph:

We are beautiful, we are complex, we are worthy of love, and we are entitled to integration into our communities and workplaces. We must move forward with a commitment to truth and a dedication to not only our own well-being, but also to the well-being of those with whom we interact. In embracing truth, we embrace a commitment to growth, maturity, and harmony.

And the policy statement reads:

“Every person is worthy of inclusion and respect, whatever their support needs may be. We view the Autistic community as one community, encourage self-advocacy among all people on the spectrum, and also work with parents and other allies who share our goals in the interest of ensuring for everyone the rights of communication and self-determination.

We advocate for greater support and understanding for adults and children on the autism spectrum. Within the broader context of the disability rights movement, we seek to bring about more accommodation and acceptance of neurological diversity in our society. We believe that self-advocacy is essential to this process and that there must be meaningful involvement of Autistic individuals in making policy at all levels: Nothing About Us Without Us.”

You noted that the piece has generated a lot of attention. Yes...but at what cost? Just because people are reacting to it doesn’t make that a good thing. This article has triggered and demoralized many. Myself included. And I have enough to deal with without being othered, lied on, gaslit, and treated in a despicable manner by a publication that is *supposedly* an ally of mine given that my diagnoses include psychiatric ones.

As you concluded your email, you stated, “Perhaps our own perspective on the blog was flawed. We certainly fail some times in our review of submissions. But I hope at least that you can, in this reply, see what our goals are.”

I do believe your perspectives on the blog were flawed. I think the post is very ableist, contains a number of falsehoods, falsely attributes beliefs to a community that are not held, and stigmatizes the very Autistics (i.e. those who are nonspeaking, intellectually disabled, and/or need support with ADL) she claims to be “advocating for.”  People who have high support needs like my very own intellectually disabled son, who is not what Twilah would consider in the autism “sweet spot.”


Sincerely,

Morénike


2 comments:

  1. Thank you so much for this... the article they posted was absolutely horrific, and your replies are very nuanced and eloquent.

    ReplyDelete