Neurodiversity vs “The Mighty”

On the 28th of April 2015 I published an article called “the basics of neurodiversity”. (It was on my old blog, but you can see it on my new website by clicking here. It will open in a new window.) Somehow, an editor at ‘The Mighty’ stumbled across the article and liked it enough to get in touch on 8 June and request permission to republish it. {In case you don’t know about The Mighty I’ve included a link >> here << so you can see their website via donotlink.}

The time difference between The USA and Australia has meant that the discussions between them and me have spanned 8 days. While the person I was talking to was always polite and friendly, I’ve got to say that the process was rather frustrating for me.

In the initial contact the editor said The Mighty publishes pieces that celebrate disability, and invited me to let them know if I wanted to discuss details around publishing my article. I said I was interested.

In the next email I was asked to change my first paragraph. Fair enough, the original was rather specific to my blog, and changing it a bit would provide more context. I wrote up a new introduction and sent it off. All seemed well, I was asked for a bio and headshot.

The next message surprised me a little. They wanted to remove the image descriptions from my article. It was followed an hour later by another email saying not to worry, they would leave them in. I responded that I was pleased about that as image descriptions as they are useful to many people with disabilities. I was left wondering how a website like theirs could not be on board with such a thing already?

The next email contained a request for an official definition of Neurodiversity. I’m now going to start including full quotes of my communications with the editor.

The thing is that the Neurodiversity Paradigm is being championed mostly by a grassroots movement, so you won’t find a lot of discussion on it outside grassroots social media like blogs. I am hearing more about it being included in academic discussion and a little bit of research, but it is still just catching on there, really. Blog posts are becoming widely accepted as valid sources of information, particularly in the area of disability studies. Disability Studies Quarterly regularly publishes articles that cite blog posts.

Nick Walkers writing (editing to add that I had referenced Nick in my new introduction) is the best I’ve read on the topic, and is becoming widely accepted within the movement as the go to resource, and probably is the most accessible language, as once you start referencing academic writing the information tends to become inaccessible to many. Nicks definitive piece on the neurodiversity paradigm, the “Throw Away the Master’s Tools” essay, wasn’t originally a blog post. Printed in a book, cited in multiple academic works, and assigned in classrooms around the country. And getting reprinted in a textbook from Pearson, a major academic publisher.

On top of what I’ve already said, I strongly feel that requiring external referencing on a grassroots, owned by the people it talks about movement, is silencing those people and invalidating the work they are doing.

At this point I requested to see a copy of the article as I suspected it was being heavily edited.

A copy of the text of their edit was sent to me. This is my next message:

I notice you have removed a section at the end of the article. 

“The Pathology Paradigm includes the word “Disorder” in all the above labels (except of course the label “normal”) and says that all these neurodivergences require treatment in order to make the brains, and the people with those brains, appear more normal.

The Neurodiversity Paradigm maintains that diversity is good and that people with neurodivergences are valuable just as they are and should not be forced or coerced into participation in treatments designed to make them look more normal.

Neurodivergence is something a person can be born with (e.g. Autism) or it can be acquired (e.g. a traumatic injury to the brain). Of course, if a persons neurodivergence leads to them being unwell, unable to function the way they want to, or in danger of any sort, there is no reason they should not seek treatment, or assistance and accommodations, in order to look after themselves the best way they can, but this is a decision that should be made by the person themselves without being pressured by others simply for the purpose of conforming to societies expectations of normality.”

This section is crucial to help people see the discrimination and challenges Neurodivergent people face in advocating for themselves. I realise there may be an issue with length of the article, but I suggest that at a minimum the following be included. 

The Pathology Paradigm includes the word “Disorder” in all the above labels (except of course the label “normal”) and says that all these neurodivergences require treatment in order to make the brains, and the people with those brains, appear more normal. The Neurodiversity Paradigm maintains that diversity is good and that people with neurodivergences are valuable just as they are and should not be forced or coerced into participation in treatments designed to make them look more normal. Decisions about treatment, accommodations and supports should be made by the person themselves without being pressured by others simply for the purpose of conforming to societies expectations of normality.

If this is not possible I would prefer the article not be published, as this point is such an important one. 

This is what The Mighty was happy to publish:

‘The Pathology Paradigm includes the word “Disorder” in all the above labels (except of course the label “normal”) and says that all these neurodivergences require treatment in order to make the brains, and the people with those brains, appear more normal. The Neurodiversity Paradigm maintains that diversity is good and that people with neurodivergences are valuable just as they are and should not be forced or coerced into participation in treatments designed to make them look more normal. So according to the paradigm, decisions about treatment, accommodations and supports should be made by the person themselves without being pressured by others simply for the purpose of conforming to societies expectations of normality.’

With the explanation that the change was to properly attribute all facts.

There is a certain irony, don’t you think, that they are attempting to edit my words to conform with a standard, within a sentence that speaks against doing the same?

Let’s be clear. The Mighty believes this sentence is too controversial for their readers:

Decisions about treatment, accommodations and supports should be made by the person themselves without being pressured by others simply for the purpose of conforming to societies expectations of normality.

My response:

I think it is pretty clear in my original words that the sentence sits under the previous one as being attributed to the ethos of the Neurodiversity Paradigm. I wrote the sentence to deliberately sit there and imply that I agree at the same time, and I am uncomfortable with changes being made to imply I, as the writer, am merely reporting on the issue. I am Neurodivergent myself, and prefer to leave the personal aspect in my article. I hope you can understand my insistence on this.  

And that was the end of that.

The editors at the Mighty feel that they need to distinguish between ‘fact’ and ‘paradigm’, and that the statement “decisions about treatment, accommodations and supports should be made by the person themselves without being pressured by others simply for the purpose of conforming to societies expectations of normality” is too controversial to be included without the qualification according to the paradigm directly in front of it. They will not publish my work unless I agree to this edit.

The Mighty, a publication that claims to help disabled people, believes it is only theoretical- not fact- that disabled people have a right to determine what treatment, accommodations and supports they need. 

I sent the following response:

That is a very disappointing outcome.

Aside from having spent a week discussing with you, it is frustrating to be told that my experience and beliefs are not valuable unless edited a certain way. When I, as a Neurodivergent person, write about myself I expect that I will do so without other people telling me which parts of my experience and beliefs are too controversial. If someone requests to reprint my work because they like it and think it carries an important and helpful message, I am not comfortable with them dictating to me which parts of the message are ok to speak and which aren’t. I strongly object to being told that “decisions about treatment, accommodations and supports should be made by the person themselves without being pressured by others simply for the purpose of conforming to societies expectations of normality” is not a fact but merely an ideal being held up by a few people.

If you have seen my writing much before, you will know that I don’t shy away from calling people and organisations out when they do things that are hurtful to the people they say they are helping.

The Mighty falls into this category. Your website says The Mighty was started to help people with disabilities. My impression as I look around the site is that The Mighty has become a website of inspiration porn that works to meet the emotional desires of parents of disabled children and does nothing to serve the needs, or even touch on the interests, of disabled people. How you can claim to be helping disabled people when you won’t feature their unedited voices is hard to understand. 

Screen Shot 2015-12-21 at 6.06.54 PM

image above: a circle of rains each in it’s own circle ‘head’, with each has a different color. Over the top of the brains is a stamp that says “Not good enough for “The Mighty””

I don’t care that The Mighty won’t publish my article. I really don’t. I did not approach them or pitch it to them. They came to me and asked to reprint it, then told me it wasn’t good enough. That is what I care about, because you can bet I am not the only one they have done it to.

I care about seeing someone claim to help or represent the views of a group of people, then censor and silence them when they speak out.

I care about seeing a well known publication choose one angle, that makes them and their readership of parents feel happy and validated, but actively ignores and fails to represent all aspects of the story from within a group- while they are claiming to advocate for them.

Not only does doing these things hurt disabled people and contribute to the perpetuation of stigma and misinformation, it feeds parents of disabled people a diet of words that help them dwell on their own misery instead of empowering them to support and care for their children in ways that protect them from stigma and discrimination.

The Mighty has a long way to go before it actually truly helps anybody.

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8 thoughts on “Neurodiversity vs “The Mighty”

  1. Elizabeth White Vidarte says:

    I agree with everything you write, but I’m troubled that you do not touch on any person whose neurodivergence means that s/he cannot, whether through difficulty with communication or with abstraction, advocate for her or himself about which “treatments, accommodations, and supports” are in fact helpful. In other words, I share your deep skepticism about such “treatments,” the focus of which is usually on making neurodivergence conform to social standards of normalcy. But there are situations in which a person might need help (for example, with self-injurious behaviors) and may not be able to directly seek it (even with AAC supports). I do not raise this issue to derail your overall point, but because I think it is one that in fact does affect many families and neurodivergent persons. Leaving us out of your paradigm was surely not your intention! If anything, it is even more important to be aware of the ethical quagmire that arises when someone is not able to seek help for him or her self. The issues you raise are amplified, not diminished, in this case. So why leave us out altogether? It’s hurtful, and can’t be helpful… I want to thank you again for your post. Please do think of us in future!

    Like

    • michellesuttonwrites says:

      Elizabeth, thanks for commenting.

      I am not sure who you are meaning when you say I left you out? Are you referring to neurodivergent people who communicate without speaking, or to their families?

      If it was families, then this article, and the one I refer to in it, are not about families at all- they are about neurodivergent individuals, so the exclusion of families in the discussion was intentional. If you were referring to families when you say I left you out, then I am quite comfortable with that.

      If it was neurodivergent people who communicate without speaking, they are included in my statement “decisions about treatment, accommodations and supports should be made by the person themselves without being pressured by others simply for the purpose of conforming to societies expectations of normality” (To be clear- there is no paradigm that is *mine*, and this statement is not part of a paradigm, it is a fact- which was the point of my objection to the edits). Everybody communicates and those communications should be respected and effort made to understand them if they are not in a form that is automatically understood by the ‘listener’.

      To my way of thinking, the ethical quagmire arises when neurodivergent people, and people otherwise disabled, are not treated with respect and afforded their basic human rights, which are the same rights as any other person.

      In short, I do not see the need to distinguish between one group and another when I write about the way neurodivergent people are viewed, because we all should be afforded the same respect and treated with fairness and in ways that meet our individual needs.

      I hope that addresses your concern.
      Michelle

      Like

  2. Kara says:

    Dear Michelle,
    Thank you for this post. You make some really great points. Foremost, I agree with you that when you are asked to contribute (republish) an article you have written, it is only appropriate that your position be presented in that article and not essential modified or changed.

    All readers know and understand that the content in an article is the view of the original writer of that article, and it is incumbent upon the reader to distinguish how much of the content of the writer is composed of opinion and how much is fact and to interpret the content accordingly.

    So many of the illnesses that exist in this world have been discriminated against throughout history, causing many people to not get the regard or services they need. Thus, a change of paradigm is necessary in so many different areas. I applaud you for being a strong and outspoken advocate in an area where you have significant experience and insight. That should never be discounted.

    Good for you. Thanks for speaking up, and keep raising your voice.
    Kind regards,
    Kara Linn
    Wyoming, USA

    Like

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