Autistic Author, Artist, Advocate, and Speaker

Category: Uncategorized (Page 1 of 2)

Yes, I Am an A.S.S.

Decorative photograph of two people are silhouetted on a jungle gym made of platforms and rope nets against a bright sun, with lens flare and bokeh effects dotting the image.
It is good when Autistic people work with and for other Autistic people.

I spent some time today updating the Facebook page for this blog and my related work under the Unstrange Mind umbrella. I had not updated it since my first book came out in 2013. I’ve had two more books published since then. It was time for a small makeover.

It’s no secret that I use AI productivity tools. I do all my own writing, but AI helps me outline and brainstorm, among other tasks. I’m a solo owner-operator of two businesses — Unstrange Mind and Mercury Muse — and there’s no way I could run two businesses alone without supportive AI tools.

I wanted to update the tiny bio Facebook allows me on the Unstrange Mind page there. Words are at a premium. I had “Maxfield Sparrow is an Autistic scholar activist, community facilitator, and” (I later had to edit this part down a few characters to get it all to fit.) I turned to one of my AI assistants and we had a brainstorming session about how to describe the rest of my autism work.

Scholar activist covers most of the autism writing I currently do (although I have been working on a novel with four Autistic primary character, but it’s still a while before that’s going to be ready to see daylight). Writing, in general, is a way I serve the community from a distance. Writing is close, intimate communication that happens when I’m not even present.

Community facilitator refers to the work I’ve been doing for the last four years, serving as peer support group facilitator for various groups of Autistic people. This is more direct work in which I serve small groups of people directly.

The other work I do is rooted in my training as a DSP – a direct support professional. But that is a medical term from a medical industry and I feel less comfortable with that career title all the time. I’ve also been trained as a disability employment specialist, and I’m planning to go through training to become an autism life coach. Everything in this category is work I do one-on-one, directly with people. There is no job title I’m aware of that covers this much territory.

Until now. My AI and I fine-tuned our thoughts and words together and ended up with “Autism Support Specialist.” I really like that. The phrase describes what I do – specialized support, one-on-one, with fellow Autistic people.

But what I really love is the acronym. Being Maxfield Sparrow, A.S.S. is a great way to clown on the pretentiousness that can too often go along with having a string of letters after one’s name. I’m not some fancy professional, I’m just some ASS who’s helping other people get more of what they want from their life. Remembering the silliness of that acronym might help me remain humble and open, listening to my clients, remembering that I have been trained to help them, but they are the experts in their life and they already know what they want to do. My work is to help them make that happen.

Should You Write a Memoir?

The Atlantic published an article today, titled “Why You Maybe Shouldn’t Write a Memoir”. The author, a Harvard professor who writes about how to be happier, uses scientific research about self-referential SPEECH to try to dissuade people from WRITING about their lives. This is really sloppy work, Prof!

A person, viewed from the shoulders down, is wearing red plaid sneakers, a dark shirt and shorts. They are sitting cross legged on the grass at sunset and writing with a pen in a journal.

He writes that people’s lives are boring and not worth reading about. He says that telling our story will make us less happy. He strongly insinuates that people get addicted to talking about themselves and it could be a sign of a mental illness.

What if writing and publishing articles that tell people their lives are boring and mis-use science to “prove” that writing about their life is bad for them…what if *that* is a sign of a mental illness? (I’m not interested in flinging diagnoses around, but seriously…what is healthy about discouraging people from creative pursuits?)

If you want to write about your life, write about your life! Don’t even worry about whether you will publish it or not: the act of writing about your life can INCREASE your happiness and self-understanding.

This goes doubly for every neurodivergent person reading my words. Write your Autiebiography. Write your ADHD memoir. Write your Tourette’s tales. The world is just beginning to realize how much it does not understand neurodivergent people and the more of us who write about what it is like to live in our neurotypes, the more people will be able to offer us the levels of understanding we need and deserve.

So, I’m going to comb through this article and talk about some of what is very wrong about it.


The author’s first piece of evidence that it would be bad for you to write a memoir is that your life is boring. My counter: says who? Good writing can make anything interesting. And you are never required to try to publish your memoir anyway.

Who are you writing your memoir for? If it’s for yourself or your family, it will not be boring because the only people reading it will be people who care about you. They will want to know how you feel and what you have experienced because they want to know you.

If you’re writing a memoir for the world, to help them understand something about your life or lives in general, you can hire developmental editors and polishing editors and book doctors to make sure your story gets the telling it deserves. You can join writing groups and swap stories with other sensitive writers and help each other workshop your writing.

There is no reason to assume your memoir will be boring! If someone (like this Atlantic author) tries to convince you that your life is too boring to write about, just say something like, “thank you for your input” and then cheerfully ignore what they said. Their opinion of your life is what is boring to me. I would rather read 50 pages about what you like to eat for breakfast than read another article that tells people their lives are too boring to make good stories from.

So he segues from telling you how boring your life is, to saying maybe while you’re at it, shut up. The entire rest of the article is about TALKING about yourself. What a bait-and-switch that is: the title of the article lies. It’s not at all about writing a memoir! But the author frames his article about not TALKING too much about yourself as an argument for why you should not WRITE about yourself and that is just flat-out wrong.

So I’m not going to engage with his study of people telling their stories on social media. I’m not going to engage with his descriptions of what parts of the brain are activated when you talk about yourself. If you actually worry that you talk too much about yourself and would like to curb that habit, his article is probably fine.

But do not let his article dissuade you from WRITING about your life because that is a healthy and good activity that will enhance your self-understanding and, yes, your happiness. Instead of continuing to focus on the bad Atlantic article, let me tell you a little bit about why you *should* write your memoir, if you’re feeling like that’s something you’re interested in doing (or are already doing. Or have already done!)


Dr. Diana Raab, author of Writing for Bliss: A Seven-Step Plan for Telling Your Story and Transforming Your Life, writes in her Psychology Today blog: “Writing our memoirs can help us reclaim our voice after it’s been taken away or silenced by difficult circumstances or traumas.”

While autobiographical writing is not the same as therapy, it can open our eyes to new perspectives within ourselves. Writing the stories of our lives can help us find threads of meaning in what seems like swirls of chaos.


Dr. James Pennebaker, a psychology professor at the University of Texas at Austin, has extensively researched “the power of expressive writing in helping people cope with upheavals” (quoted from his Amazon bio page). Pennebaker says: “Months after people had written about traumas, over 70 percent reported that writing helped them understand both the event and themselves better.” (From pages 139 and 140 of Pennebaker’s 2016 book, “Opening Up by Writing it Down: How Expressive Writing Improves Health and Eases Emotional Pain”)

Pennebaker writes that one potential cause implicated in the development of PTSD is the inability to “translate traumatic experiences into language” (145). Pennebaker cites the research of Jonathan Schooler into language and memory, writing, “when we convert an image in our minds into words, it fundamentally alters the way the image is stored.” (145)

According to Pennebaker, writing about our traumatic experiences helps to dissolve them in a way, loosening their grip on us. I have experienced this effect in both writing and speaking: when I put words to my suffering, my suffering is less.


While I’m not digging into the research presented in the Atlantic article, I feel like the author cherry-picked the studies he put forth. Many more studies say that writing AND talking about your life can help you heal and become happier. Not only do many professionals encourage autobiographical writing, there are several professional organizations dedicated to promoting healing through writing.

The Center for Journal Therapy (CJT) promotes the use of journaling as a tool for healing and personal growth. They offer training and certification programs for professionals and resources and support for those who journal. CJT emphasizes the power of the written word to help people process their emotions, explore their experiences, and develop greater self-awareness.

The National Association for Poetry Therapy (NAPT) encourages autobiographical writing through the art of poetry, applied in a therapeutic setting. NAPT also offers training and certification programs for professionals and resources and support for people who want to use poetry as a tool for personal growth and healing.

Additionally, the National Association of Memoir Writers (NAMW) emphasizes the healing power of memoir writing on their website. If you’d like to dig into their resources, I recommend starting with this free e-book, Memoir Writing as a Healing Journey.


My bottom line, with respect to the Atlantic article: don’t let the author’s negatively stop your writing. It doesn’t matter whether you publish or not, keep writing. It is good for you to write about your life: past, present, and future. If you’re not sure where to start, pick up a workbook, attend a workshop, hire a professional, look for free programs (your local library branch is a great place to start looking.) Lighthouse Writers in Denver, Colorado has an ongoing writing workshop called Hard Times that has some meetings online. It might be a good fit for you.

But whether you seek help in writing, look for a group of people to write with, or take the page on alone, don’t stop writing. It does you good! And if you choose to seek publication, your words could help so many people feel less strange, less alone. And never mind that Atlantic article, because there is far more research pointing to the opportunities for autobiographical writing to make you happier.

Mirror Pronouns

An image of a person inside a mirror, reaching out to shake hands with a person standing in a field with trees. They are clearly different people but both share a similar gender presentation.

Among the questions I get asked most often: what are your pronouns?

I’m usually asked by people who want to quote me in something they’re writing or want to know how to introduce me for a webinar or presentation I’m part of.

I have layers of pronouns, including a set of “professional pronouns” I use when doing public work Iike writing or presenting. At the core, my pronouns are mirror pronouns.

What are mirror pronouns and why do I use them?

I came up with the term “mirror pronouns” in 2018, when I was rehearsing for roles in the upcoming production of Eve Ensler’s Vagina Monologues at Naropa University. I had been on testosterone for a year and a half by that point and had reached a stage in my body’s changes where strangers routinely called me “he” and “sir” about 90% of the time.

Three of us had met at someone’s house to rehearse the choreography for a sketch we were doing together (the cute little one about what your vagina would wear and say). My fellow actors were referring to me as “she” and “her” during our rehearsal and I couldn’t help noticing the warm feelings I had around that. I found those feelings confusing, because I really don’t like it when cis men call me “she” but I felt so included, so seen, so loved when this cis woman and this non-binary person who used “she/they” were both calling me “she.”

After much soul searching and journaling, I realized my gender is relational. I had been shying away from the term “genderfluid” without understanding why. It’s because I *am* genderfluid, but that word alone didn’t feel like my word. When my companions used their gendered pronoun to refer to me I felt seen and had a sense of belonging.

I don’t have a gender. I also don’t identify as “agender” because, like “genderfluid” it doesn’t feel like a word that really communicates who I am. When I am alone, I don’t experience myself as having a gender. I’m not even sure what gender is…until I discovered that my gender is relational, I wasn’t sure anyone had a gender. It was just something I had to trust because other people communicated gendered experiences.

Gender is constructed and mine gets constructed in relationship. My core gender drive is belonging and when I am with someone and feel accepted by them, I experience my gender as being the same as their gender. If they use a different pronoun to refer to me, they construct another layer of my gender. For example, I have a dear friend who is a butch woman. When I am with her, I experience myself as having the same blend of masculine and feminine energy that she puts out. She enjoys my masculine presentation and refers to me as “he”. That adds an overlay, kind of like a theatrical gel sheet that changes the color of a spotlight or footlight. I am still that light that is her gender and I am also shifted to a masculine hue by her loving use of “he” pronouns. When I am not interacting with her, that light turns off and the gel filters nothing because I don’t have my own gender.

I also have professional pronouns, which are “plural they”. I am not a multiple system, yet my professional “they/them” is plural because, as a writer and speaker, I am reflecting the genders of my audience. My audience is “plural they” and so am I when I am entertaining, educating, validating, etc. a group of other people.

Crowds are overwhelming for me when I am not separated by the role of serving them or by an actual physical divider like a stage or podium. When I am serving a group — as a speaker, as a facilitator, etc. — the distance makes a sort of bubble that keeps me calm and grounded. But when I am in the middle of a crowd, like when I’m shopping, for example, it is overwhelming to my senses and psyche.

Some of my overwhelm in crowds is caused by having some of my senses intensified by my autistic neurology: so many smells, so much motion, people moving around unpredictably. I have Central Auditory Processing Disorder (CAPD) so all the words being spoken are just a blur to me. I don’t have “cocktail party ear” so in crowds I am simultaneously overwhelmed by too much sound and Hard of Hearing because I can only understand written or signed language with a few snatches of words anytime I’m able to lipread (which is spotty and inconsistent for me but I have learned that I do rely heavily on lip reading to understand people in noisy environments.)

I am also overwhelmed by crowds because I have prosopagnosia (face blindness). I become anxious because I feel like I don’t know anyone, I don’t know if there is someone there I *do* know but do not recognize. What if someone I don’t want to talk to is there and sees me and I end up in a conversation with them before I realize who they are? (This happens to me a lot) What if someone who has stalked or threatened me is there and I can’t see them? (This has happened to me before.) Will someone become angry with me if I don’t greet them properly? And if I’m there with someone, I cling to them ridiculously, for fear that they will slip from my line of sight for half a second and I won’t be able to find them again.

But once I realized how relational my gender is, I started paying attention to my gender feelings in crowds and realized how much “noise” there is for me there, too. Sometimes I joke that I have to use the family/accessible toilet because I am disabled by having “too much gender”. But that joke is based on my reality of actually experiencing too much gender when I’m embedded in a crowd. As a metagender Autist, I’ve found my dysphoria can often be drowned out by everything from autistic super-senses to trauma responses, all of which shout more loudly than dysphoria, confusing me. But crowds are dysphoric for me because the relational gender pull is coming from so many people in so many directions at once it throws me into shutdown.

So there’s a little bit of my history with relational gender and mirror pronouns. Life has been a long journey of discovery for me, with new insights unfolding all the time. I’ve noticed that Autistic people tend to keep developing for the entire trajectory of our lifespan, compared to neurotypical people who tend to be pretty settled in to their identity by age 25 and generally don’t shift very much after that age (although, of course, there are striking exceptions. Speaking of groups in the aggregate will always leave out the outliers. I try to avoid speaking about groups of people for that reason: I root for the underdog and back the outlier every time.)

I cherish that lifelong capacity for growth in myself and those around me. All of which is to say that it was a long path to get here and I can’t predict where I will be in another 10 or 20 years, if I’m still alive. All of this hard-won self-knowledge could shift again. I may be destined to spend my whole life in “figuring it out mode.”

And that’s a great thing.

What I tell people when I introduce my pronouns while facilitating peer support groups for Autistic Trans/Non-binary/GNC folks: I accept all pronouns offered in love, or at least without malice. I don’t have any pronouns, so feel free to use whichever feel right to you. I feel especially seen if you use mirror pronouns, which is using your pronouns to refer to me, but I know pronouns can be hard for some people, so don’t worry. Use the pronouns that come first to your mind when you type or speak about me and they will be the right ones. Unless you’re coming at me with hate, you literally can’t get it wrong.

Taking the PDA Questionnaire – Part One (of Five)

I’ve been taking a deep dive into PDA recently. I’ve known about it for a very long time, maybe 15 years, but have mostly ignored it because the name is so ugly and the things written about it by professionals have not resonated for me at all.

But since I’ve been listening to people who identify as having a PDA profile, I’m seeing more and more things I relate to. I took a PDA questionnaire written by people with PDA and I scored in the range that says I probably have PDA….but so many of the things I said “yes” to are descriptions of my trauma responses or descriptions of what it’s like for me to have both autism and ADHD.

Feeling even more confused about what PDA actually is or is not, I decided to make this series of posts where I respond to each question on the questionnaire in more detail. If you want to answer the questionnaire for yourself before reading my responses, you can find it here: PDA Test for Adults

Before I go into the questions, I want to emphasize that I am not saying PDA doesn’t exist. I’m also not saying it does exist. The traits people describe are real and people have (or should have) the right to self-identify autonomously. The label PDA seems to be helping many people understand themselves and that is something I always support.

I am not sure the PDA label is right for me, though, both because as I took the questionnaire the first time I kept feeling that the traits being described were due, in my case, to other causes. And also, I don’t want to take on a label that is so pathologizing the first word in it is “pathological”. But I wanted to be clear that it is not my intention to erase others as I explore these traits in myself.

There are 50 questions, so forgive me for my short answers. I am responding to the questionnaire in a series of five posts so I don’t have to respond to all 50 in one sitting.

Post Index (to be filled as I go:

  • First ten questions (this post) (2 Yes, 7 No, 1 what is this question asking me?. The yes answers were due to: one I don’t know and one that is part because of long covid and part because of dysgraphia)
  • Questions 11-20
  • Questions 21-30
  • Questions 31-40
  • Question 41-50
  • Running total of yes answers so far: 2
  • Do you find it difficult to do the simple things that other people seem to find easy? (My answer: what does this question mean?)

Right off the bat, the questionnaire hits me with the kind of question I have a hard time answering. This is too vague. Do you mean tying your shoes? Figuring out if a word is a noun or an adjective? Figuring out how I’m supposed to respond to the question “how are you?” from a stranger?

This is a yes from me if I think about things like:
– working a 40 hour work week
– ignoring bullies and continuing to go where they are (including work and school)
– being on time anywhere, ever (I am time blind and have to set several phone alarms (“two hours until X” “one hour until X” “30 minutes until X” “15 minutes until X” “X” – with “X” being specific so I know what the alarm is for) or I will just accidentally blow everything off, including stuff I really wanted to do.

  • Do you dislike praise? (My answer: NOPE)

Absolutely not. Sometimes I feel a little bit awkward, because I have imposter syndrome. But I adore praise and I keep the best of it in a little file to cheer myself up when I’m feeling blue. Earned praise feels wonderful.

  • Do you find it harder to do tasks that you have to do as opposed to optional tasks? (My answer: NOPE)

It’s the opposite for me. I find it hard to squeeze in the things I want to do because I have such a heavy sense of responsibility about things I have promised to do. So I prioritize work for others and feel driven to show up for respite sessions or group facilitation. My own work, like working on the novel I’m writing, working on my art skills, studying Esperanto, take a back seat. Even eating and bathing have to wait in line for the times that haven’t been promised to work.

  • Do you find it more difficult to complete tasks when people are watching? (My answer: NOPE)

I feel like I remember having this more as a kid than now. When I think about something like writing in public so people can watch how I write, what I edit in or edit out, and generally observe my process, I don’t feel any discomfort or stress. Maybe it’s because I’m a ham. But the same with drawing while someone watches. A YouTube person said they don’t like when people watch them put on their make-up. That never bothered me when I wore makeup (I pretty much always put it on with someone watching or at least seeing me, because I’d go to the bar and put makeup on in the dressing room before work.)

  • Do you feel a need to take charge but dislike being placed in charge? (My answer: NOPE)

I only feel a need to take charge when things are chaotic and confused and no one else is actually in charge. The only thing I dislike about being placed in charge is if it’s done without asking me first and getting my consent. But if someone says, “Max, we want you to be in charge of X. Will you do that for us?” 9 times out of 10 I will say yes. I know that I’m an acceptable leader. I’m good at delegating according to people’s strengths (and asking them if they accept the task). I’m good at directing my energy toward making the thing happen and stepping out of the way instead of trying to center everything around me as some leaders try to do. I don’t particularly have any stress around leadership (with consent).

It was about this time I was starting to think this PDA concept was not a good fit. It was so far outside my own life experience, I was shocked when questions suddenly started hitting.

  • Do you dislike being rushed? (My answer: oh HELL yes)

This one hits one thousand percent. I have had horrible meltdowns in the middle of someone trying to rush me into or through something. Being rushed feels miserable to me. I remember once I took off my watch to wash dishes at church and forgot it by the sink. I got home and mentioned it and suddenly everyone around me was shoving me out the door to go back and get it while I protested that the building would be locked up by now (it was). And then they wanted me to just go into our hang out time like that, still wearing my church clothes, feeling the adrenaline of being rushed. I yelled at everyone and sent them away to hang out without me because they weren’t listening to me and were saying my church clothes were just fine (I didn’t care about fashion. I just wanted to get out of my nice clothes before I ruined them by playing in them!!) and I wasn’t getting a chance to explain myself or even just sit down and take a breath. And the ritual of changing out of my good clothes and hanging them up and putting on casual clothes was an important part of transitioning to a different activity and I felt squished and pushed and ignored and talked over and mostly just super rushed by other people to do the things they wanted me to do.

So, yeah. This question stresses me out just answering it. Is this PDA? I don’t know. It doesn’t seem that pathological to me to want to change my clothes and sit down for a minute before being rushed right back out the door and then rushed into an activity I was not prepared for because I was forced to leave the house without the opportunity to get a day bag of stuff I would want to have with me while I was stuck in someone else’s car. That’s another thing I hate: I’m very picky about whose car I get in any more because when I am not the person driving I have zero control over where we go and what we do and I end up getting stuck someplace with no way to get back home. I have hitchhiked home because I was stuck and didn’t want to be there and no one else cared.

This doesn’t feel like a pathological avoidance of demands to me. This feels like me not wanting to be forced to be super uncomfortable for no good reason. I will be uncomfortable if it helps someone else. But I hate being forced to be uncomfortable because what I need is being perceived as an unnecessary burden that is interrupting their party time. Does that make *ME* the pathological one??

  • Do you feel unsure of how you will react in a situation, despite past experience? (My answer: no)

I don’t think so. I often tell people I don’t know how I will respond, but that is only with respect to situations I haven’t been in before so I really don’t know how I would respond. I tend to feel pretty solid in my knowledge of myself and my understanding of how I will approach a situation I’ve been in before. Every once in a while I do surprise myself, but I generally feel like I know myself well and know what to expect. When the way I will react is different from past experiences, it is because I have thought about that situation and planned what I would prefer to do and then I go into that situation again, waiting to see if I fallback to old patterns or find the courage to try to new reaction. That’s about as “unsure” as it gets for me.

  • Do you feel like others are always wrong, even though you know logically that isn’t true? (My answer: nope)

Nope. Others are not always wrong. On most topics, others are mostly right. When I logically believe someone is wrong, I also feel that they are wrong. When I logically know people are not wrong, I don’t feel like they are wrong: not then and especially not always. I can’t remember ever feeling this way.

  • Do you dislike imposed routine? (My answer: only if I actually don’t like the thing being imposed on me, so no.)

I’m going to assume that “imposed” means someone else is forcing it on me? I hate when things I don’t want are done to me without asking me first to get my consent. For example, I went to a school that made my class schedule for me. I complained because they took me out of Spanish class and put me in French class for whatever reason. But I had been studying Spanish in school for at least five years by that point and I did not want to stop studying Spanish! I complained and asked, moving my way up the power hierarchy, until I found someone willing to switch me back to Spanish.

I didn’t get control over any of the other classes chosen for me and I didn’t care. I only get upset about routine being forced on me when it’s something I don’t like. I didn’t care one way or the other about the other classes. They were all okay enough. I only got upset and dug my heels in when they made a choice for me that I distinctly didn’t want. I actually thrive with routine, so if I’m not getting enough structure imposed on me from outside myself, I start creating routines myself, in order to ground me in space time.

The only routines I don’t like imposed on me fit under other categories: Routines that are too tightly planned and make me rush from one thing to the next. Routines that are built around more than I have to give: like the 40 hour work week that will grind me into nothing very fast. Routines built around things that take a lot more from me than they give back yet I was never asked if I would accept that responsibility.

  • Do you/have you ever struggled in work/school due to the amount of work required of you? (My answer: yes)

Absolutely yes, but not (that I’m aware of) because of PDA. I do not have enough physical bodily energy to work a 40 hour week ever since getting COVID on February 15, 2020. I literally, physically do not have the energy. I can actually *do* 40 hours worth of work in many areas (writing, for example), but I cannot work for 40 hours out of the 168 hours in a week. I just get a lot of work done in shorter bursts of time, and it evens out somewhere along the line.

As for school, again the answer is yes but not because of PDA. I have dysgraphia and any situation where I was required to write a lot by hand was impossible. I got shouted at in the Navy over not being able to do ten pages of handwriting a day. I got in trouble with every teacher ever because I barely did any homework or schoolwork because I wasn’t allowed to type (and we didn’t start using computers until I was 15 and even then, only in computer class and I still wasn’t allowed to type my homework because “handwriting is an important skill you will need for your entire life!”)

So there are the first ten questions. Future posts will address the rest of the questions. I may do a sixth wrap-up post summarizing what I’ve learned from this series. I also would be happy to add a list of useful resources in the sixth post if people feel like sharing them with me as I go through this experiment/experience.

Thank you and stay tuned!

I apologize for the spammers

My web host is as secure as a block of swiss cheese. I’m in the process of switching hosting but it is agonizingly time-, energy-, and money-intensive. In the meantime, I comb through my posts for the spam links and delete them. I change my password regularly. And I apologize to you.

For the record: I do not accept advertising on this site. I do not embed advertising on this site. If you see a spam link woven into one of my blog posts, I promise you I did not put it there and I will be removing it as soon as possible.

Predators are taking advantage of me and my blog. Please do not click the links that are obvious advertising and, for the love of all that’s important in this world, please do not buy something from one of those links (the redbubble t-shirt links are mine. Feel free to buy a sticker or t-shirt if you like them.)

Thank you.

Speaking to Sui*dal Autistics

This is a transcript of a YouTube video I published six years ago.

Watch this video on YouTube here

 Hello. This is my last video from where I’m at here in Maine because next week I start heading south again. It’s gorgeous here. I’m sure you can see what a beautiful day it is. Today I came out in the bright sunshine to talk about a dark topic suicide. I am a survivor of multiple suicide attempts, and before you worry, I’m fine right now, but I wanted to share that because I read an article this week by m Kelter of Invisible Strings.

I will have the link to that down below. And in that article, he mentions that two-thirds of autistic adults are suicidal. I’m just pausing for that to sink in two-thirds, and today I want to talk to that two-thirds.

The thrust of the article was that you should be very careful what language you use when talking about autism. Because we’re listening, we’re reading. I wanna be vulnerable today because a lot of people have told me they read my writing and they feel … they … they view me as so strong and powerful and proud.

And yes, I am all of those things, but I’m also very vulnerable and weak, and I struggle with depression and anxiety, and I want you to know you’re not alone. You’re not alone. It’s really, really hard to be an autistic person in this world. It’s hard to be anyone in this world today, but there are days when I am convinced that the world hates me and everyone like me, and it doesn’t take much convincing when there are people out there talking about stamping out autism and early detection.

So, you know, what does early detection mean? It means let’s, let’s detect the autistic people before they’re even born. Let’s make a world without … I’ve actually seen organizations in their mission statement say that they are fighting for a world without autism, and that’s horrific to me because a world without autism is a world without me.

There’s another article that I’m also gonna post down there in the comment box below this video. You’re not alone. It can get better. It does get better. Don’t leave us. We need you. We need you. How can we have a full understanding of autism without your voice? We need you. Don’t leave us.

So number one, you don’t over-commit.

Now, that’s a huge thing. You say, no, that’s hard. You make boundaries. You fight guilt and pressure and internalized shame. It’s okay to have boundaries. It’s good to have boundaries. Don’t feel guilty for saying no.

People will try to tell you, you should be doing more than you’re doing. ‘You’re not living up to your potential. You’re not doing enough.’ You’ll tell yourself that. You’ll think I only got one thing done. I got nothing done today. Nothing done today. I’m worthless. Believe me. I have those days. I have a lot of those days. The thing is, you’ve got to remind yourself that you’re working with a different processor, you’re working with a different neurology.

Number two, don’t be afraid to ask for help.

This is easier said than done. I have a really hard time if I ask for help. You know, I’m really in dire straits because I just don’t do that. I learned over the years that it was pointless. I wasn’t gonna get help anyway. I was just gonna get blamed for my problems. I was gonna get told to try harder. So I just gave up. Don’t give up. Learn how to ask for help.

Find someone you trust and ask them to help you learn how to ask for help. Just know you don’t have to do it alone. Whatever it is, life. You don’t have to do life. You are not alone. We’re here, ask for help.

Number three, find happiness within.

Don’t go chasing happiness thinking it’s just around the corner, just over that hill in that person, in that job. Find it inside yourself. And a really great tip the article gave was to make a happiness list. I think this is a marvelous idea. I’ve done it myself.

When you’re feeling good, write down everything that makes you happy. It doesn’t matter whether it’s something big like travel. Or something small like smelling a puppy’s tummy, which makes me really happy cuz they’re so fuzzy and they just smell so puppy.

You know? I mean, if it’s running your fingers through the water coming out of the faucet, put that on your list. That makes you happy. Put everything on your list that makes you happy. Star Trek is on my list. Let me tell you a few episodes and I might not be happy yet, but I’ve pulled out of the funk I was in because Star Trek really makes me happy a lot.

Music. A really great thing to do is make a playlist that starts with music that matches the mood you’re in and it goes through shades of mood and ends with music that makes you feel really happy.

Like, I know it’s cheesy, but R.E.M.’s “Shiny Happy People”, you know, it’s just the right beat. I’ll get up and dance. I’m really happy, but I can’t go straight into it. I have to work my way there: if I’m not feeling it, that song just pisses me off.

Don’t compare yourself to others. This is number four. Don’t compare yourself to others.

And, yeah, because especially don’t compare yourself to people who aren’t autistic because they’re not autistic. They’re not, I mean, they’re like you because we’re all human beings, but they’re not like, you don’t even compare yourself to other autistic people. You know, if I sit around and compare myself to John Elder Robeson, and Temple Grandin, and Leanne Holiday Wiley. I mean, really, I don’t mean to insult these people, I’m actually praising them. These are really successful people. And Lynn Soraya. really successful people who are autistic. And if I’m feeling bad and I start comparing myself to them, I’m gonna feel like crap.

Because Lynn Soraya writes in Psychology Today, and John Elder Robeson has his own business and Temple Grandin, she gets to hug cows every day for a living. I mean, come on. What a life, you know? And I need to only compare myself to myself. Like right now, I’m sitting on this amazing grass hill with these trees behind me, in Maine.

I’m in Maine. Maine is glorious, and it’s sunny today. It’s gorgeous, and I’m so grateful to be here. You know, when I compare my life to my life, it’s pretty great.

Make another list, an achievement list. I know you have achievements. I don’t care who you are. You have amazing achievements. Look back at yourself five years ago, 10 years ago. Look back at what you were like when you were four or five, and think about yourself. Now you have amazing achievements. You do. I promise you do. And don’t give up on your amazing achievement list until you’ve put amazing achievements on there.

You know, when I’m sitting there with my car broken and no money, and I’m trying to work up the gumption to ask someone for help or do some other kind of problem-solving, it helps to look at my amazing achievement list. Don’t compare yourself to others. Make your own list of amazing achievements.

Number five, don’t second guess your decisions.

You have an inner wisdom. You have an inner truth. You can make the right decisions. You might need to ask for help. You might need a mentor.

Trust that you can make decisions. Don’t let people convince you. That you aren’t competent to make your own decisions and your own choices in life, you may need support achieving what you’ve decided to achieve. But don’t second guess yourself. You have wisdom. Do yourself. Don’t let other people tell you who you are.

That’s that’s your choice, who you are. Don’t let other people tell you what you can and can’t do. You know what you can and can’t do? Don’t you know what you can do? You know what will crush you and what will uplift you. Don’t let other people tell you who you are and what you can do and what you can’t do.

Number six, don’t feel guilty about taking me time. I mean, seriously. Everybody needs time for themselves. Especially autistic people. My goodness, we need time to recharge our batteries. Even really outgoing, really people oriented, autistic people need time to recharge our batteries. You have to put your own oxygen mask on first.

You have to take care of your own needs first. You have to don’t feel guilty or ashamed or let other people pressure you not to take the time you need. To rest, to restore yourself, to get your wits back about you, to, to recollect your spoons and your energy. And you need that. Don’t let people take away your me time.

Um, if you have kids, it’s really hard to get me time. But carve some out. Find somebody who will watch your kids. Somebody you can trust to watch your kids while you have some time away. Everybody needs me Time. You need to have time for yourself, time to do your own thing, time to do nothing. I take time to just stare at the wall or a tree or the sky or whatever.

I take time to do absolutely nothing, and that’s, that’s very important. And everybody needs that. Everybody needs that.

Number seven, don’t beat yourself up when you make a mistake. And now this one is really important because a lot of times when I get really depressed it’s because I feel like I did something completely stupid and sometimes it was completely stupid. I’ll be honest with you, sometimes I really screw up. I just really screw up and then I beat myself up over it.

I just, I dwell on it. I. Can’t let it go. I chew on it. I chew on it and chew on it, and I need to, I’m processing it. My brain needs, I don’t process things as fast as other people. Sometimes things that people process in a minute or less, it takes me days or weeks or years. So don’t let people tell you that you obsess over things too much because y sometimes you just need to chew on things, but don’t let you get yourself in a funk.

By beating yourself up over something you did or said. You can’t take it back. You can’t undo it. But what you can do is frame how you chew on it. And I have these things I say to myself, I, I like when I’m really feeling bad and I’m saying, God, I’m so stupid, I start right there because I’ve learned that I can’t, you know, those, those, those, um, what do they call them?

Those statements of affirmation when I’m really feeling down a statement of affirmation, you know, I’m good enough, I’m smart enough, and gosh darn it, people like me. That’s just bullshit. Excuse my language. But when I am depressed, when I’m suicidally depressed, I can’t pull myself out of it by talking about how great I am because I don’t believe it.

So I start with where I am. I start with, God, that was stupid. That was stupid. Oh, I can’t believe I was so stupid. And from that I move into, I was stupid Sometimes everybody’s stupid, but I’m still a good person and, and every time I feel those bad feelings come up as I chew on what I did, I say, yeah, I’m stupid, but it’s okay.

I was still a good person. Yeah, I’m stupid, but I’m gonna get past this. It’s gonna be okay. Everything’s gonna be okay. It’s okay that I’m stupid. Everybody does that sometimes and, and see, that’s manageable. That’s a bite. You know, I’ve, I’ve bitten past that really deep self-loathing and I’ve entered a, a, a, a lighter period of self-loathing.

And from that, I, I moved to, Um, for, I moved from, I’m stupid to, I said something really stupid, but I’m not gonna do that again. Okay. Maybe I will do it again because I’m stupid. Nope. I’m not stupid. I’m not stupid. I made a mistake. Everybody makes mistakes. It’s gonna be okay. I made a mistake. Now I’m in this lighter level of self-loathing where I’m almost now of self-loathing.

Now it’s it. I’m not stupid anymore. I made a mistake. I made a mistake. It’s gonna be okay, and it may take me hours to get to this point, but it, it’s about framing. I. What you’re chewing on and, and taking bites that you can swallow. You know, if I start out with, oh, it’s okay cuz I’m a great person, is this, I can’t swallow that.

I need a bite. And I need to chew through it. And so I made a mistake, but I learned I can learn. I learned from my mistakes. I’m learning from my mistakes. God, this sucks. It sucks to learn from my mistakes. I wish I didn’t make mistakes. Everybody makes mistakes. It’s gonna be okay. I’m a good person. Good people make mistakes.

I’m learning from my mistake because I’m a good person. If I weren’t a good person, this wouldn’t upset me so much. I’m upset because I care. I’m a caring person. I care about whether I hurt other people. I care about what other people think about me. I’m a good person because I care about people liking me, being good to people, and having people be good to me.

I’m human. It’s okay to be human. Humans make mistakes. Humans say things that are wrong.

People can forgive me. I can forgive myself. I forgive myself for being human. It’s good to be human. It’s real. To be human. Being human gives me compassion for other people. Having compassion for other people is how I help others.

When I make mistakes, I learn and I can help other people. I can understand other people, I can forgive them and empathize with them, and that’s what I’m trying to do today. You’re human. You make mistakes. You’re different. People won’t always understand you. It’s a cruel world. People say and do harsh things.

It can be hard even just to keep yourself fed. It can be hard to find a space in life where people aren’t taking advantage of you. It’s hard. I know. I live it too. I’m there with you. You’re not alone. We can be human together. It’s a good thing. I love you.

Love yourself.

If you enjoyed this, I don’t know why. I’m cutting that. If you enjoyed this video, click the subscribe button below. Follow me. I try to make videos every week. Try to be here for you. Open, vulnerable, sharing my life as I travel, and make mistakes and be human. Have a great day because you’re a great person.

But What About the Good ABA Therapists?

ABA Bear

Image description: A hand-drawn bear of many textures is riding a tricycle. Above him are the letters ABA and below the letters, it says Abolish Bear Abuse. Below the bear, it says A bear will do ridiculously unnatural things for a handful of gummy humans … but that does not give you the right to make him do it. Available on t-shirts, stickers, tote bags, and more. Copyright Maxfield Sparrow

This week I ended up in yet another conversation with someone who wanted to defend ABA. He repeatedly asked us not to demonize ABA and kept dismissing discussions of the origins of ABA by saying that Lovaas is a long time ago and we can’t compare ABA to where it came from. Along the way, he used a racist analogy that I won’t repeat here.

He kept insisting that there are abusive ABA practitioners and good ABA practitioners so we shouldn’t vilify the entire body of ABA based on those bad apples. After several rounds of that, I wrote this and decided to polish it and share it here in my blog as well. Thanks for reading!

My problem is bigger than ABA. I have a strong issue with the entire field of behaviorism from which it springs. (I know, I know. You have some analogy about how I shouldn’t judge roses unfairly because they grew from manure. Now we can skip past all these analogies. You’ve been heard there.)

Before behaviorism, psychology was concerned with mind. Psyche. It’s hard to translate from the Greek, but you usually get soul, mind, or spirit. The whole field of psychology was concerned with interiority.

Along came Skinner with his boxes and his pigeons and his scientific revolution. You can’t question a pigeon about her interior existence or enact the talking cure on her. All you can observe is her behavior. And so behaviorism was born, by studying animals and later transferring the methodology to humans.

Skinner didn’t originally want behaviorism to be applied to humans. Read Steve Silberman’s excellent history in the book Neurotribes for more details about Skinner’s concern and eventual yielding to those who wanted the theories of behaviorism to enter the field of human psychology.

This is why so much ABA looks like animal training: that’s where it came from. Watch anyone training a bear to do tricks and you will recognize the methods. (Any readers who have been traumatized by therapies should not watch videos of bear training. It gave me nightmares for weeks.)

ABA has a fundamental flaw because Behaviorism has a fundamental flaw. It’s a psychology cul-de-sac that people cling on to because they don’t know how to access the interiority of those who do not speak so they don’t know how to do any psychology other than animal training when faced with non-speaking clients.

And since Behaviorism rapidly became the gold standard for addressing autism, the toxic viewpoint and theories blanket nearly all autism projects, programs, theories, therapies, and classes. Most insurance will only pay for something named ABA, so everyone jumps into that name because it’s the only game in town. And the organizations certifying people as officially qualified to perform ABA are perpetuating everything that’s wrong with Behaviorism while veiling it in soothing words – often, ironically, Behaviorists use wording lifted from the Neurodiversity Movement but stripped of their intended meaning and context. It’s insidious and it’s awful.

And some good people slip through. Some people give lip service to behaviorism, knowing in their heart it’s the wrong approach, get their certification, and then get out into the world and practice with genuine compassion and help people.

And a lot of those people don’t have the resources to set up their own practice, so they go to work for someone else and are forced to do things they feel very wrong about if they want to keep that job. Those who don’t have the resources to quit and go work someplace else end up with PTSD over time because of what they are economically forced to perpetrate. I feel for them. I’ve met some after they quit and recovered somewhat. It’s a very real trauma they’ve experienced – the trauma of causing trauma in others. It’s a hard thing to deal with.

I never did make that flaw in Behaviorism clear, did I? That flaw is the Black Box. Behaviorism is external. Behavior. What you observe.

You say ABA cares about internal things? Motives? Preferences? Aversions?

True, but it’s designed to be able to glean all that from observing behavior, not from social-emotional bonding between client and professional.

You can talk all day long about practitioners who do care about their clients, who do bond with them socially and emotionally, who do care about interiority, etc. You and I both know that they exist. I have met some BCBAs that I really liked, who were genuinely good people.

But … in order to present ABA as something beneficial for ALL Autistics, it has to be something that can be done with non-speaking Autistics and show documentable results.

That’s the number one argument I hear from those who support ABA: “it works. It’s documented.”

I’m not denying that. ABA works for all the same reasons that bear training works. My argument against Behaviorism is that I don’t want my people viewed as or treated like animals. We are human beings. It harms us to be viewed as or treated like animals and that is what Behaviorism encourages from its practitioners.

Behaviorism, at its core, only cares about the exterior reality of a person. And until professionals start learning how to access interiority with non-speaking Autistics (it can be done. I know parents who do it every day with their non-speaking children) Behaviorism and ABA will always be the order of the day because ABA is easy and documentable and no therapist ever has to return 15 to 20 years later to clean up the mess when the trauma they started finally comes to full fruit.

Every oppressive system has many, many good people in it. People get caught into systems in so many different ways. I will never deny that there are good people out there practicing ABA. But there are far more people out there damaging children because they are working from within a system that, by design, damages people. In the end, the good ABA therapists don’t matter. I mean, they matter as human beings and I feel for the struggles they will face if we manage to get rid of ABA and they have to re-certify in something else.

But it doesn’t matter that there are good people doing good work in ABA. The system is so flawed and so damaging those few good apples aren’t worth taking on the whole rotten barrel.

The “With Autism” Series

A friend showed me an article today: Study: Drivers With Autism Just As Good As Other Motorists. My friend joked that they needed a bumper sticker that said “Autism is my co-pilot” since they were clearly driving with autism (as opposed to driving while Autistic.)

autism is my copilot

[image description: a square white sticker that says autism is my co-pilot.  Available on Redbubble by clicking the image or clicking these words.]

A 2018 study found that “Drivers With Autism Just As Good As Other Motorists”. A friend pointed out that if you’re driving with autism, autism is your co-pilot. Now, most Autistics I know don’t drive, but if you’re one that does drive celebrate by putting this sticker on your vehicle, letting the world know that, hey! you’ve got this driving thing down. After all, you’re with autism!

After getting their permission to “steal” that brilliant idea, more ideas kept coming. There are so many ways to be with autism, after all.

You’ll need someplace to store and carry that autism you’re with:

Autistic people can go about our lives without a care, but the moment someone insists we are really a “person with autism” we have to figure out where to put our autism so we don’t accidentally leave it behind at home. Enter the autism bag. A clear label warns others to stay away from your autism while sturdy straps allow you to carry your autism along everywhere you go. The stylish accessory every person (with autism) needs.

Caution Autism

[image description: a teal drawstring bag that says Caution! this bag is filled with autism. Available on Redbubble by clicking the image or clicking these words.]

caution autism

[image description: a purple tote bag that says Caution! this bag is filled with autism. Available on Redbubble by clicking the image or clicking these words.]

But I hadn’t quite captured the full zeitgeist of person-first language. There needed to be a t-shirt that acknowledged the autism accompanying a person. And here it is:

I'm with autism

[image description: a red t-shirt that says I’m with autism and has a hand pointing to the left. Available on Redbubble by clicking the image or clicking these words.]

Are you an Autistic who keeps getting called a person with autism? (Is being with autism like being with child?) Tell the world that you are here with autism. Autism is evidently right next to you. “What, you can’t see it? How can that be possible? I am clearly a person. With autism.”

In case it’s not clear, all these designs are satire, meant to snark a little bit at person-first language with its assumption that autism can be sifted out of a person and set off to the side as something incidental that “just happens” to exist but “doesn’t define” the person who is carrying it around like a pet or an accessory.

Guest Post – Spectrum: A Story of Mind

The following is a guest post from Noah King, a review of the film Spectrum. Enjoy!

Spectrum: A Story of Mind
a review by Noah King

Spectrum is beautiful. Never before have I seen such a story that can simultaneously educate and emulateSpectrum film logo autism as a subject so well. It’s everything I could have asked for, as someone diagnosed on the autism spectrum myself.

To think that a video like this could be constructed, and shown all over the country, is astonishing to me. As recently as a few decades ago, autism as a subject was still very much misunderstood and isolated – defined as an explicitly incorrect way of living life. To see the strides we’ve made as a population in such a relatively short amount of time is uplifting, enthralling. In a way, this video is a culmination of the suffering endured by those under autism’s great umbrella of coverage and influence – individuals such as Temple Grandin, featured in Spectrum, who grew up in such a whirlwind of sensory issues and miscommunications, what have since sufficiently climbed the ladder of society, the hard way. It’s these individuals that have spurred forth the research and development of treating and working with autism, as well as several other mental conditions, including ADHD and ADD. Spectrum is, in essence, our story, and our answer to the question, “What do you mean, you don’t think that way?”

And this is where Spectrum is given its true strength – empathy and understanding. I have to give congratulations to the amazing editors, musicians, artists, sound designers, and other technical staff who worked on this film, for how they’ve helped to demonstrate autism to neurotypical persons. Autism is a sensory kerfuffle, a nebulous and omnipresent shifting of sights, sounds, smells, tastes, and feelings. And so too is Spectrum – we have bizarre animations, startling imagery, heightened and disturbing sounds, bizarre movement, the list goes on and on. All of this, featured between footage of persons with autism – the type of people usually dismissed from an off appearance, or a noticeable difference in intelligence or social skills. These are the experiences these people endure for most of their lives.

Most important is a breaking of stereotype – the people shown all exhibit widely different forms and variations of autism. We have developing children, and we have adults holding successful jobs. We see communication disorders, lack of eye contact, a severe response to stimuli, inability to speak, and, most importantly, we have people who have broken the mold – people like the martial artist featured in Spectrum, who have utilized their autism in their career. We have the potential to become so comfortable in our own skin, the line between the neurotypical mind and the divergent mind will blur. This is what Spectrum concludes on – having journeyed from developing children to adults of various dispositions, various careers. The effect is all at once demonstrative of autism, as well as demonstrative of how much we’ve come to learn about it.

This movie was phenomenal. It’s an excellent primer concerning autism and autistic people for those unfamiliar with it. I’m happy to see it – the movie is proof of how far research on the Spectrum has advanced over the years. If it were up to me, Spectrum ought to be shown in all classes dealing with mental disabilities or development.

In Praise of Dr. Paul K. Longmore

This is a re-post of an essay that originally appeared on Unstrange Mind November 10, 2015.

Dr. Longmore

[image description: a photo of Dr. Paul K. Longmore. A white man with glasses, wearing a brown shirt with a collar. He has grey hair and a grey beard and mustache. His mouth is partially open as if speaking.]

I have many heroes, living and dead. These are people who are role models to me, people who have changed my life for the better and motivate me to work to change others’ lives for the better in return. Paul K. Longmore is one of those people who has paved the way for me to have a fuller and more fulfilling life. Longmore worked to make the world a better place for disabled people and his work has had a direct influence on my life. One reason I work so hard to make the world better for other disabled people is so that I can pay forward the great debt I owe Paul K. Longmore.

I learned about Longmore’s work shortly after I self-published my first book, No You Don’t: Essays from an Unstrange Mind. I had worked hard to write my collection of memoir-flavored essays about my lived experience of autism and my hopes for the children currently growing up Autistic. Not only did I write, revise, and edit all the writing, but I laid out the typesetting for the print version, designed the cover, and created the Kindle version. I spent many hours in front of a computer tweaking images by a pixel here or a pixel there and shuffling words around to prevent awkward widows and orphans (isolated bits of words at the top or bottom of a page, disrupting the visual flow of pages.)

The book released very successfully, considering what a small fish I am, and I dutifully reported my income from it. Social Security rules for earnings while living on SSI are designed to help disabled people transition from living on benefits to being self-supporting. A small initial amount is exempt and then SSI is reduced fifty cents for every dollar earned. So I expected my checks to be reduced by a small amount, but imagine my shock when my checks were slashed so dramatically that I couldn’t pay my rent anymore. (I had already spent the royalties I’d received in that first burst of sales on life necessities, assuming that I would still get nearly a full SSI check later.)

When I contacted the Social Security Administration (SSA) about the problem, it turned out that they were considering my income under the rules for “unearned income.” These rules are more draconian: one’s check is reduced dollar-for-dollar. This is why I never bothered to go get utility assistance: if an agency gives me money to pay my winter heating bill, that money is unearned income and my SSI check would be reduced by the exact dollar amount two months later. So all utility assistance does for a person on SSI is shuffle their expenses but it doesn’t actually help them in any way.

It took me months to straighten out my money situation with Social Security and I am grateful that my landlord worked with me during that time because otherwise, I might have become homeless in the middle of the battle. The SSA was applying the rules for royalties that come from things like mineral rights. If you are on SSI and strike oil on your property and sell that oil to a corporation, the money you are paid is called royalties and it is considered unearned income. I have no problem with that because selling mineral rights on one’s property doesn’t require a lot of effort on the seller’s part and the oil that is pulled out of their land is worked by someone else. That income pretty much is unearned.

But the royalties that come from a creative work of art are different. As I said, I worked hard for a long time to put that book together and I continue to work all the time to market that book. I continue to work, writing more essays and books and promoting them in various ways. The royalties I earn from my book are, indeed, earned. I haven’t yet earned enough royalties to compensate at minimum wage for the hours I put into creating the book. My task was to prove to the SSA that I had earned that money and deserved to have my income considered under the earned rules instead of the unearned rules. And when I set out to do the research to prove my case, that’s when I discovered Paul K. Longmore.

Longmore was a history professor and a disability activist. In 1953, at the age of seven, Longmore developed polio and lost the use of his hands as a result. He needed expensive medical care for the rest of his life, due to post-polio syndrome, and so keeping the medical benefits that come with Social Security disability was very important to his survival.

Longmore wrote an award-winning book, The Invention of George Washington, by holding a pen in his mouth and using it to type on a keyboard. It took Longmore ten years to write his book. I do not tell you of his writing process and the length of time it took him to write as some sort of inspiration porn. I tell you because it underlines how much the royalties from his book were earned income, not unearned in any sense of the word. Longmore worked hard on his book and it is a highly regarded book in its own right.

But the SSA did not share this view and Longmore was suffering as a result. The fact that they took away every penny he earned was bad enough, but he could not accept awards for his book if they included a cash prize and his healthcare coverage was at risk. Longmore burned a copy of his book on the steps of the SSA main headquarters in Washington, D.C., an act of protest that he wrote about in an essay included in his collection, Why I Burned My Book and Other Essays on Disability.

Longmore’s protest and subsequent lobbying lead to a change in the late Eighties to the SSA rules governing earnings from creative works, colloquially known as the Longmore Amendment.

This is just the beginning when it comes to learning about Dr. Longmore’s contributions to disability activism and I highly recommend reading his books and learning more about his life. Sadly, Longmore died unexpectedly in 2010 at age 64, but his legacy lives on. He is one of my heroes and I think he will become one of yours as well. Thank you, Dr. Longmore, for fighting for our rights.

When I took my information to the SSA — information about the change in rules and direct citations from the SSA’s own rulebook — my meeting was almost anti-climactic. My caseworker barely looked at my evidence and changed my earning status with no fight at all, treating me as if I were engaging in overkill by bringing in documentation (despite the way I had been treated earlier without documentation, even to the point of being lectured that SSI is “need-based” as if I shouldn’t even want to have a higher income let alone have a right to work for a higher income and a chance to transition off benefits, becoming self-supporting.)

My reception was irritating, but I got over it pretty quickly when I saw the results: I don’t have to report my income month-by-month. Every year, I submit my tax returns and estimate my next year’s earnings. My check is adjusted annually, based on projected earnings. I am free to focus on working hard to build my business of writing, speaking, and trying to help shape a future world that has a place for people like me.

I owe much of my continuing success to the work of Paul K. Longmore. I hope my work pays tribute to his memory. He is one of my heroes and role-models. Thank you, Dr. Longmore, for fighting for all of us disabled folk who are trying to build careers and touch the future through our work.

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