Monday, January 15, 2018

A Long History of The Mighty Refusing to Listen to Neurodivergent Folx

This post is a collection of three posts that were originally on my Medium page. I'm relisting them here. Part 1 is from March 29, 2017. Part 2 is from March 30, 2017. Part 3 is from January 12, 2018. Parts 1 and 2 are still up on Medium. 

photo of a femme person with white out across their eyes; a white text box with black text: "A Long History of The Mighty Refusing to Listen to Neurodivergent Folx" and "Not Standing Still's Disease"


Part 1: An Open Letter to The Mighty on Their Continued Support of The Hate Group Autism Speaks


I recently saw that The Mighty is partnering with Autism Speaks (AS). We need to have a conversation about this and I sincerely hope that you pass it along to people further up as well.

I realize that The Mighty gets a lot of traffic through parents of autistic children. However, I also know that the chronic illness world brings in a lot of traffic as well. I share at least half a dozen articles from The Mighty on my various social media accounts which I know generates a good amount of traffic as well. I have been happy to write occasionally while sharing when I can.

However, as someone who *is* neurodivergent in addition to being a writer and having written for The Mighty, this partnering with AS is concerning and, frankly, disgusting.

Autistic children are referred to as burdens constantly and consistently. The focus with AS is ‘fixing’ the child and relieving the burden of being a parent with a disabled child instead of on helping the child grow. True, they may not be focused on a ‘cure’ anymore, but they aren’t exactly welcoming their children with open arms as parents should.

AS also refuses to do much of anything to help with autistic young adults and adults. How much can they be assisting people living with autism when they don’t even help patients themselves past the time when we receive the most support?

I’ve included links below by people who are *actually* autistic, many parents, and other organizations that discuss the dangers of AS. Some of these articles are slightly outdated, sure, but there are plenty that address the more recent developments as well — sharing how this doesn’t change much at all. (Links sent can be found in this masterpost of issues with Autism $peaks.)

I hope that you will pass this along. As a writer, I have many pieces I’d love to continue contributing to The Mighty. However, I will no longer be doing so when the site partners with an organization that erases the humanity of so many people. I am not the only writer involved with The Mighty that feels this way.

Know that a continued relationship with AS will continue to damage The Mighty’s reputation and relationships with influential bloggers and writers like myself — writers that have stuck with The Mighty despite an inability to pay us. We have stuck by the site through a few PR nightmares that you’ve been able to bounce back from. However, we cannot and won’t continue to support y’all when you partner with organizations like AS that preach eugenics ideas while working with Neo-Nazi groups.

It is a PR nightmare for those of us who have our own reputations at stake and who would not be able to bounce back like The Mighty has and, from an ethical standpoint, it is wrong to continue support of AS.

The Mighty articles I currently have scheduled to post (on social media) will go up. Any others will not be featured on my various social media accounts until/unless The Mighty ceases its support of this organization. I would also ask that you remove my articles from the site if there will be a continued partnership with AS.

Thank you for your time,
Kirsten

Part 2: The Response


Yesterday, I wrote a letter to The Mighty about their support of the hate group Autism Speaks. This was their response.
Hi Kirsten, 
Thank you so much for reaching out about your concerns. Unfortunately, there is some misinformation circulating regarding the nature of our relationship with Autism Speaks.
The Mighty has a non-profit partnership program which takes a variety of forms. The purpose of the partner program (which does not involve money) is to bring free resources to people through stories on our site. We partner with hundreds of organizations, including but not limited to the following autism-related organizations: National Autism Association, Sesame Street, The Art of Autism, ACT! Today, Geek Club Books, Asperger Experts, AutismTalk, The Color of Autism, Global Autism Project, Autism Speaks, and STAR Institute for SPD. 
We do understand the concerns about Autism Speaks. We added them to our partnership program only after they announced the change to their mission in the fall of last year. As a company, we believe autistic people and their families need acceptance and understanding, and we do not support curing or eradicating autism. 
We do believe a crucial element of our partnership program is that our site and community helps the partners’ audiences. By us sharing more content by autistic writers and autism community advocates, it can help educate and change perspectives for the better both within and beyond our Mighty community. We are now one of the largest platforms for autistic writers, and sharing our writers’ stories with Autism Speaks can help their readers who may still be struggling to understand and accept autism.
All of our partners have a “partner box” (we sometimes refer to it as a “module”), which can appear at the bottom of stories and offers links and resources on the partner’s website. We generally add one of these boxes to stories based on the content, but writers who are associated with a partner as employees, volunteers, or supporters can choose to have that box displayed below their stories. Autism Speaks’ partner box is only supposed to be used when a contributor has expressed support of the organization — we do have a number of autistic writers who are affiliated with them. However, an oversight led to the box being added to an autistic writer who does not want to be affiliated with Autism Speaks. When this individual contacted us, we immediately removed the partner box and apologized. We want to assure you we will work harder to make sure contributors are always comfortable with the partner organizations in their stories. 
We are open to feedback regarding our partnership program and would especially like to add additional partners in the autism space that you, our writers and readers, support. So if you are part of an organization or can recommend one, please let us know!
Our health and disability community is very diverse, and opinions differ on important issues. We do evaluate our partnerships periodically, and we never compromise our editorial standards for a partner. We actively work to fight ableism and content that disparages the disability community. We are committed to sharing the voices of autistic writers and the diverse voices of the larger disability and health community. 
We hope this helps to alleviate your concerns.
— The Mighty Staff
Guess what? It doesn’t.

They have indeed compromised standards to include Autism Speaks as a partner.

Autism Speaks has supported TORTURE as a means to a CURE for Autism. They consistently support anti-vax ideals. And they’re supported by NEO-FUCKING-NAZIS.

My response:

I appreciate your response. My concern was not that there was any financial benefit, but that The Mighty is legitimizing AS as an organization — an organization with a history of legitimizing literal torture, speaking over people who are actually autistic, and promising things for publicity’s sake without any intent of following through.

You say sharing these stories with AS may help them understand. Unfortunately, autistic people and organizations have been doing this since AS started. AS does not care and does not understand. They are using The Mighty to legitimize their place as a ‘charity’ and to try to change how people see them. Until they have actually made changes, this is hurting you and your readers more than it’s helping them.

Not much has changed within AS since the changes you’ve spoken of. Regardless, their history of supporting torture of autistic people as a means to finding a cure is barbaric and I’m surprised that The Mighty has not taken these things into account.

Again, I will point you to various articles and ask that you actually read them this time as it’s clear you did not from your response. I would hope you’d have more respect for your supporters and writers than to simply send back a form letter and forgo reading the links I included. I put this masterpost of pieces against AS together last night and will be pulling articles from it.

Autistic people across the internet are up in arms over this partnership. Yes, as I already did before your response, they understand this isn’t financial, etc. Marginalized people — in this case, autistic and neurodivergent people — are speaking up and calling for a change here. If your goal is truly to provide an intersectional and safe place, you’ll start to listen. Otherwise, you’re losing readers and supporters by the minute.

Want to support Actually Autistic organizations? Here are a bunch that aren’t ableist in nature and *actually* include autistic people on their boards, etc (unlike AS):
  • The Autistic Self Advocacy Network
  • The Autism National Committee
  • Autism Network International
  • Autism Women’s Network
  • TASH
  • ADAPT
  • American Association of People with Disabilities
  • APSE
  • National Council on Independent Living
  • National Youth Leadership Network
  • Academic Autism Spectrum Partnership in Research and Education (AASPIRE)
  • HSC Foundation
  • Self Advocates Becoming Empowered

I urge you to check your social media mentions because, as this gets out more and more, people are extremely upset and swearing y’all off as a resource. This is going to lead to a lack of writers because of people like myself leaving, too. You’re associating yourselves — and, by association, your writers — with an ableist hate group created for parents (not autistics) that has the support of eugenicists and white supremacists. I hope that you can see why this is a bad look.

Kirsten

Part 3: The Facebook-ening


Karin is asking me to remove her comments as this was on a friends-only post. However, as a writer who does journalism from time to time, acquiescing to this request would violate my journalistic integrity. I doubt DT’s recent shithole comments would’ve been released if we had to give permission to share quotes. I doubt we’d want to live in that world. It's being posted here after being removed from my Medium page.

A dear friend recently asked on Facebook for an update about The Mighty as someone there wanted to interview them — were they still problematic AF, etc. I commented and pointed out that they still partner with Autism Speaks which has a long history of existing as a hate group. I also shared how TM refused to listen to concerns and “basically pulled ‘free speech’ crap on anyone who said this [partnership with A$] was bad.”

Some of you may remember that, last year, I shared an email I wrote to The Mighty on this partnership as well as their response. I asked a number of questions, shared sources, and asked for my articles to be removed from The Mighty… none of which happened. I received no further replies.

Said friend was grateful for the information and formally declined to participate with TM. As it turns out, an editor for TM is one of their FB friends.

Cue the following interaction. (Note: bold words are highlighted by yours truly.)

Karin Willison, Disability Editor:
I am Disability Editor at The Mighty. I’m not the person writing this article, but I wanted to ask if you would reconsider. I have spoken to her about her project and I think it’s amazing. What she’s looking for in this situation is a person to interview and get a few key quotes, as it’s a News/Lifestyle feature about sex and disability. 
Unfortunately there’s a lot of misinformation out there about The Mighty. Most of it is not true. Most employees have a disability or chronic illness of some kind, including the person who wants to interview you. I wouldn’t disclose further without her permission, but I’m sure you could talk to her about it if it would ease your mind. I’ve been working hard at editing and promoting quality disability content since March 2016. We have been covering very important issues, like Medicaid and marriage, the lack of actors with disabilities in TV/movies, the boycott “To Siri With Love” campaign, and so much more. We reach millions of people every month. I review all disability-related submissions and also consult daily with our parenting editor to make sure ableist content does not get published. I also assist other editors/sections with these issues. 
While I personally do not like That Autism Organization, The Mighty’s connection with them is extremely minor. They don’t get any money from The Mighty or vice versa; all they get is a directory listing, and writers who want to include info on them in their post can do so. Honestly it’s been months since I have seen their info in a post, and I always choose a different organization to feature because as I said… I’m not a fan either. That said, we have at least two autistic authors (not parents) who have worked for That Organization or been volunteers, and I do find it frustrating when their perspectives and existence are not even acknowledged amidst the cries of Everybody Hates That Organization. Bottom line, the disability community is diverse and I believe it’s important for each person to think for themselves. I encourage you to check out some of our articles and decide for yourself! I’m happy to answer any questions you may have…message me anytime.
My reply:
Despite the outcry of many of us — including those of us who have asked for our articles to be removed from The Mighty in correlation to partnerships with A$ (which has not happened) — there is still a partnership with A$ which is an organization that has openly supported torture for those of us who are neurodivergent. I’m not sure why any disability organization would EVER feel comfortable having any sort of link to them. 
The Mighty would still have someone who writes on these topics [sex and disability] if they took concerns that I shared seriously. I’ve asked several times for my articles to be taken down from your site due to this unholy partnership, and I get no reply much less action taken on my requests. 
There is outcry among most disabled people about this and yet TM refuses to acknowledge this, save in letters to those of us who complain (whose follow-up emails — like mine — get ignored). 
Furthermore, it’s condescending to claim that those of us who are upset and frustrated are spouting misinformation. We know the situation — it’s still horrendous. Why? Any organization that ignores writers’ wishes, blocks them from groups, refuses to pay them despite making money, and downplays these issues isn’t working for *justice* for disabled people. Period. 
My friend pointed out that, regardless of other concerns, they deserve to be paid for their time and expertise (and rightfully so). Said friend — who previously had pieces on The Mighty — asked for their articles to be removed as well. The Mighty not only lost one writer (that they didn’t really have), but two — and likely more.
The editor did offer to help remove my pieces (which I hope actually finally happens but won’t hold my breath). They also claimed that they were not saying my comment about A$ was misinformation but that “People say silly stuff [about The Mighty] like it’s run by all non-disabled people which is totally not true.

I shared that there is misinformation out there about any and every site. In my opinion, however, the most concerning stuff is what’s true — and how companies handle that truth. Leaders within disability and chronic illness circles tend to stick together and share interactions and concerns they’ve had. I know we’re not the first two people to ask for our pieces to be removed over this specific issue — and I have a feeling we won’t be the last.

Still, there seemed to be an inability to understand how affirming A$ as an organization was a dangerous thing.

Editor:
My understanding is that our (as I said very small) connection with them only began after they changed their mission statement and hired autistic board members. Prior to that they had been turned down for any connection. Certain people in the company I think feel they deserve the opportunity to change. Personally I don’t think they are worth having any connection to because even with them making improvements, there are far better organizations out there. But at the same time, I don’t see why the Mighty is the target of such extreme anger. I mean, are people going around to every other disabilities site that has a link to AS and getting angry about it? Because that is what the so called partnership amounts to. They get their link and in exchange they share some of the Mighty’s articles on social media… which is getting good autism acceptance content out there to people who need to see it. If it were up to me we would not bother with them because they are such a lightning rod, but at the same time I do feel the connection is overblown. Not the criticisms of that organization, but the blaming of the Mighty for stuff AS did in the past.
When I pointed out A$ is still shit, I got this reply: “ …except they don’t have that in their mission statement anymore. So that’s why some people want to give them another chance. I’m not saying I do, like I said I don’t care for them, but I don’t think you can squarely say that they still support those views. I mean, Margaret Sanger was eugenicist, but that doesn’t make Planned Parenthood a bad organization, know what I mean? Organizations change, it’s just way slower than we all would like most of the time.

I pointed out something that should be obvious:
Despite changing their mission statement, they haven’t actually changed at all and continue to promote harmful rhetoric that everyone in the disability community should be afraid of and angry about. I’m not sure why people think not explicitly stating that they want XYZ doesn’t mean they won’t still participate. Trump isn’t a Nazi explicitly and he still acts like one. 
PP has problems — but they also acknowledge them and work on them. A$ and TM seem to refuse to hear any dissenting opinions. That’s not how to run a successful organization, but what do I know? I just run my own business, have a side gig with a major EHR company, and work with major organizations. 
If y’all checked your emails and actually read dissenting ones, you’d have heard this last April from many of us.
And the editor:
I have definitely heard the opinions… And like I said if it were up to me we wouldn’t have any connection with AS, but it’s not. I have shared my recommendation of not having a connection with them repeatedly, though. If and when anything changes I will be sure to let you know. I do know that other concerns have been heard and acted on, especially regarding parents sharing ableist narratives and inappropriate information about their kids with disabilities. That has been a big focus for me since day one. You would not believe the stuff I and the parenting editor turn down for publication. There are some great parents out there but there are some seriously messed up ones too. We’ve also discontinued using the phrase “special needs” except in direct quotes or to critique it, though it still appears in older content. And we have so many more disabled writers that the content even in disability and autism categories is mostly by people with conditions rather than parents. So I just wish people would stop throwing the baby out with the bathwater over the AS issue.
Because disapproving of TM’s unwavering support of a hateful eugenicist group is akin to throwing a baby out with the bath water.

Jesus fucking Christ.

Their final comment:
It seems like this all comes down to a disagreement about whether AS has changed, is changing, can change. Some people interpret their new direction as changing, some don’t believe they will ever change, and some think perhaps they will but it’s too soon to support them. It seems like most people here don’t think they will ever change. My bosses think they have changed and are continuing to improve. I think they’re at the beginning of changing but I’m not comfortable supporting them right now. But someone believing they have changed, whether you agree or not, does not equate to supporting eugenics and/or hatred of autistic people. It’s simply a matter of giving them more credit than they perhaps deserve.
What a shitshow.

My (original final) comment was asking for confirmation once our pieces — mine and my friend’s — were removed. Again, I’m not holding my breath, but I hope this will end a very long year of fighting to get my property off a shit site.

I had to continue asserting my boundaries and stating I was done with having this conversation several times.

Exhausting.

What went wrong here?


  1. Your organization should be accessible and willing to have a dialogue with writers. You should not be ignoring writers who share concerns about partnerships. A partnership with A$ in this context legitimizes it as an organization rather than a hate group.
  2. Don’t play kumbaya. Disability rights/justice peeps aren’t having it. My existence isn’t up for debate, and neither is my humanity. I shouldn’t have to preach to another disabled person essentially from a pulpit about why this connection with A$ is dangerous.
  3. If you’re FB friends with someone and you’re trying to persuade them to do something — and telling them they should message you to talk more about it — you should be the one messaging them in the first place. You don’t make this a comment on an open post. This is especially true if others commenting have shared their disdain for your organization or company.
  4. Respect boundaries. Period.

There is so much wrong with this interaction and these two organizations. Honestly, I’m writing this as comments keep happening, so I haven’t had time to sit with it.

I will say this, though.

I don’t need to be fixed. Honestly? I don’t want to be. There’s no way I would ever want to be abled — that’s not who I am. I would miss out on the amazing friendships and chosen family that I only have because of being chronically amazing. I would certainly love less pain. I would adore not having some recurring acute things pop up, like frozen shoulder. I want to make headway in my health and fitness. I’d go gaga for sitting up for three hours without going numb and needing to nap. Hell, I’d take being on less fucking medication.

Still, I wouldn’t be ‘me’ without what I’ve gone through. I certainly wouldn’t be the same without my light limp, PTSD hypervigilance (which helps as much as it hinders), and more.

I do not want a cure. I don’t need to be cured. My kind don’t need to be erased. We need a lot of things, but not erasure:
  • accessibility
  • a better medical system
  • a government that doesn’t love eugenics and white cishet abled neurotypical supremacy
  • mental health care
  • mass transit systems that don’t fucking suck
  • a guaranteed national income
  • captions, sign language, and CAR-T
  • empathy *gasp*
  • privacy
  • people to believe us at our word

Most of all? We need freedom, respect, and justice. None of these things will be found at The Mighty, Autism Speaks, or other ‘disability’ organizations that refused to listen to disability justice activists.

Looking for more about how The Mighty sucks?







Tuesday, December 19, 2017

End of Year Health Update

photo of two legs with black leggings against a dark gym floor; pink text "end of year health update" and white text "not standing still's disease"

It's been a while since I did a health update on here. Things are going... okay? As of last week, I was discharged from pelvic floor therapy. This week, I anticipate being discharged from neck/back PT as well.

Around Thanksgiving, I joined a gym. I've been working out 3-6 days a week, depending on how my body is doing. I know that when my body winds up being very numb, it isn't safe for me to go and do much. Despite being on a prednisone burst, I've lost ten pounds in the last few weeks. 

I had a follow-up with the neurology physician assistant earlier this month. I left unenthused, to be frank, and frustrated with the lack of care I'm receiving. The PA was more concerned about telling me to do things I already do and medication-shaming me than working with me around the very odd symptoms that reared their ugly head big time this year. 

I find it alarming to tell a patient in distress that there are medications that can alleviate their symptoms but they're on "enough already."

Still, we added in B2 and magnesium which - when I take them both daily versus as needed - have helped with my migraines. This has had no effect on my odd numbness, though, as the PA assumed it would. This tells me that my odd symptoms aren't related to my migraines (as she assumed) or that these levels aren't enough to tackle the issue.

a variety of pills, capsule, and tablets of a variety of colors in someone's hand

It takes me about 20-30 minutes to take my morning meds now. It's frustrating to have to sit with illness first thing in the morning for so much longer. That said, I know doing so helps me to process this stuff all better from a physical standpoint at least.

I'm wondering whether or not my odd symptoms combined with worsening rash could be something related to mast cells like Mast Cell Activation Syndrome (MCAS) more than anything else. I'm playing with the idea of calling for an evaluation. Honestly, I'm avoiding it because I can't handle another doctor refusing to listen and shaming me for using medications to live a higher-quality life.

On the dental front, there are two crowns we have to do. One is on a front tooth and another is on a back molar that really doesn't function. I'm not sure that it's worth saving that tooth honestly. The cavities we've been playing catch-up with are taken care of now, thankfully. 

My acupuncturist has been incredibly helpful, getting me to unwind more than I was when I was going to a clinic for this. He's so much fun, too, and we talk a lot about sex education, impromptu consults, and more. I don't think I've ever left every single appointment with a provider with a hug and renewed peace of mind like this.

I was lucky enough to snag three free months of Talkspace back when they were giving free months out for survivors of abuse. I haven't utilized my therapist very heavily - partially because I always skirt the big things - but it's been helpful to have. She's great, only lives a few hours from me, and is incredibly similar to me in the best kinds of ways.

Over the last few weeks, we've dealt with Jaq having an upper respiratory infection for weeks (which can be fatal quickly for guinea pigs), major depression, apartment issues, increased rash, interpersonal havoc, and more. It's been a lot to handle on top of everything going on in our country and world.





Monday, December 11, 2017

The Beginner's Guide to Cannabis for Pain

background of photo is a dark background with various bokeh-style lights; a white outline is slightly inset from the corners; everything is middle-aligned; a green cannabis leaf with white text "The Beginner's Guide to" green text "CANNABIS FOR PAIN" white text "Not Standing Still's Disease"

A lot has changed for me in a year, and a lot of it comes from being more open to trying cannabis and CBD-related products for pain relief.

In December 2016, I tried high CBD edibles for the first time on a trip to Oregon. I had instant pain relief that lasted for a few days, despite traveling and dealing with flight delays. A year later, my pain levels have gone down immensely with the help of cannabis-related products like those containing CBD oil

I heavily believe that without the pain relief CBD has brought into my life, I might not be here. I was in so much pain. Do I still hurt every single day? Absolutely, but not nearly to the same levels as before. I've even gone from being essentially couch-bound to hitting the gym 4-6 days a week.

Science?


The popularity of cannabis and CBD for health has grown immensely over the last few years with increased visibility, legalization, and research on these materials. There's much more research now on the abilities of cannabis products to relieve pain, aid with immune system function, ease PTSD, and lower nausea. You can find more research here.

Organizations like the US Pain Foundation continue to share information about and advocate for medical marijuana - and the inclusion of chronic pain causing conditions. Ellen talks often about how societal stigma made her avoid cannabis for pain at first and how it's changed her life. Even Sanjay Gupta has been a vocal supporter of medical marijuana for several years.

Choosing a Method


There are many ways to partake in the legal consumption of cannabis or CBD products. A variety of companies offer items like CBD gum, capsules, vape pens, lotionsgift boxes, and more. United Patients Group has a great resource around the pros and cons of different methods.

If you are utilizing any part of the cannabis plant - psychoactive or not - medicinally, it's a great idea to track the effects. Different methods might affect you differently. For example, lotions help me immensely with my Still's rash and joint pain while vaping tends to help my PTSD and anxiety more.

Your local dispensary can be an indispensable asset. When I was in Oregon, I was able to talk through options with the staff there and choose items that fit what I was looking for - something with high CBD for chronic pain.

Before you start this journey, make sure to check the status of cannabis in your state. Note that there are many ways to take action if you'd like to help the legalization process further in your area.

More Resources


If you're looking for more information on CBD and cannabis-related resources, please check out this resource page.

Do you have questions about the use of cannabis or CBD for pain? Have a story to share? Leave a comment!

Disclaimer: This is a post sponsored by Nakturnal. All opinions in this piece remain my own and I was in no way influenced by this company or their sponsorship. All information displayed in this post is for educational purposes only and is not to be construed as medical advice or treatment for any specific person or condition. Cannabis has not been analyzed or approved by the FDA. Individual results may vary. Be aware of cannabis' legality where you live before partaking.