January 2018 - Not Standing Stills Disease

There are many things we learn over the course of an illness that would’ve been better known towards the start. Funny enough, though, a lot of these things can fit in the alphabet. What better way to share things we wish we knew at the onset of illness?

A: Am I sick?

Sometimes it’s easy to doubt how ill we are. We gaslight ourselves because others doubt our illnesses. We might have a few good days and think we’re better. But, yes, we are sick even when we’re doing well. Even if I can’t see it or my friends and family can’t see it, I am still sick. Just because I look good or show up not naked to things doesn’t mean it doesn’t hurt.

B: Bills, Bills, Bills

Get ready to watch any savings you have leak slowly out of your account to cover medical bills, prescription co-pays, and more. Plus, good luck working to try to pay those off when your body won’t give you a break and you can’t hold down a real job!

C: Curse Words

They help relieve pain. No, really. Use the power of the curses and swears!

D: Disclosure

Every single time we meet someone new, whether romantically or platonically, we have to share about our illnesses all over again. It sucks – not just because of how difficult it is to be that emotionally vulnerable but also because we get to watch these potential relationships fade away as the impacts of our illnesses become more readily apparent.

E: Exhaustion

The level of tiredness you’ll face will be way past just tired and, at times, even past fatigue.

F: Food

Our relationship with food gets so complicated. You might be hungry all the time for a week and then lose your appetite for six months.

Guessing game:

One of the most frustrating things about being sick is not being able to tell what you’ll be able to do at any given time. Having to RSVP essentially means playing a guessing game based on the season, other things you need to do around that time, and random crap.

Hot flashes:

Chances are, you’ll deal with this (and/or cold flashes) as a part of your health issues. Keep a bottle of lotion in the fridge for those hot flashes. It’s a lifesaver!

I: Intolerances and allergies

Many people with health issues have or develop intolerances and allergies to various foods or other things. Conditions like these are called comorbidities and are super common.

J: Juggling

One of the most difficult things about illness is handling a million and one things at once. Schedules take a huge hit, necessitating a lot of juggling. A pile of doctor appointments on top of picking up medications and other supplies, getting lab work, etc. – it’s a lot, especially if you’re working.

K: KT Tape, Braces, and Wraps

One of the most important things to learn is how to ease pain and support your joints. Ace bandages don’t do the trick when they keep unraveling! Meister kickboxing/MMA wraps work a lot better. KT Tape can be super helpful, especially for supporting knees.

L: Lab Work

Depending on your health issues and medications, you may need lab work anywhere from once a week to a few times a year.

M: MRIs

Chances are you’ll wind up in an MRI machine at some point. It’s very loud. On top of the noise, it’s not easy to lay a certain way – very still – for sometimes hours on end. Get your meditation or nap on.

N: No

Having to say no to a lot of things you’d rather do is commonplace. Eventually, you’ll have to start choosing what is more important to you, prioritizing time with friends and family in new ways.

O: Oh my god, why?

Everyone goes through periods where they get upset. We wonder why we’re ill when others aren’t. It’s okay to feel that way.

P: Pills

Get used to sounding like a maraca when you walk! And taking pill after pill. And figuring out what to drink with all those pills.

Q: Quitting

It’s okay to quit. It’s okay to feel lost. Quitting on things one day doesn’t mean the fight ends – it just means you need a break. And that’s okay.

R: Relationships

The toll that health issues take on relationships is often underestimated, whether that’s

S: Sex Life

As I talk about over on Chronic Sex, illnesses have wide-ranging effects and can especially affect our sex lives.

T: Thinking is hard

Brain fog is an asshole. It can and will rob you of your ability to think and communicate clearly with others. It’s a part of why I do almost all of my communicating via writing – it’s the best way for me to be able to fight the fog.

U: Unpredictable

Chances are, your health will be incredibly unpredictable. Swelling, pain, and other illness factors do not work on a schedule.

V: Vomit

Yup. You’re gonna vomit – maybe a little or maybe a lot.

W: Well-meaning friends

People make well-meaning comments that erase the feels we have. The thing is that we know you mean well, which is why we don’t get hella angry, but erasing our feels or experiences is super harmful.

X: Xerox (as in making copies)

You’re gonna be making and copying and printing out a million and one things related to your condition(s)… including the incredibly long medical records we’re likely to have.

Y: Youth

Guess what? People get chronically ill and disabled in their youth. These things can strike at any age. Get over it.

Z: Zebra

The zebra is an adorable and majestic animal. It’s also silly and cute. More importantly for illness stuff, though, the zebra is a rare disease mascot.

What would you add to the list?

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.

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

I never received a response.

Part 3: The Facebook-ening

The editor involved in this post filed a DMCA and has been harassing me across the internet. Due to that, the following has been highly edited as of Feb 15, 2019.

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.

The editor asserted that, since a few autistic authors write for TM under the A$ label, it’s unfair to shirk the organization. They also did not seem to grasp that TM’s relationship with A$ – even supposedly without financial support – legitimizes the existence of A$ and promotes it as a safe organization when it is not.

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 claimed that disability activists won’t give TM a chance because of their past actions, that we should be giving them more of a chance because of how they’ve supposedly changed.

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.

When I pointed out A$ is still shit, the editor claimed the small changes A$ made – changes that are really in name only – they pulled out some amazing apologetics despite not supporting A$. Again, I was told we’re supposed to give organizations a break when they’ve continually supported harm, torture, and eugenics.

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.

This editor stated something akin to the fact that me disapproving of TM’s unwavering support of a hateful eugenicist group is like to throwing a baby out with the bath water.

Jesus fucking Christ. What a shitshow.

After raising a stink, they finally removed my pieces from their site.

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

Exhausting.

They continued to stalk my social media pages and sites to find new ways to threaten my ability to make a living, too, so that’s fun.

What went wrong here?

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.
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.
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.
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.