Not Standing Stills Disease

An Update on The Invisible Disabilities Situation

Posted on August 12, 2016December 5, 2021 by Grayson

Invisible Disability Project has this statement for our friends in the disabled community, activists, bloggers, and the press in response to the overwhelming support they’ve received from the disability community and allies regarding the Invisible Disabilities situation. The story has also been featured in The Daily Dot.

We mourn the loss of the Invisible Disability Project (IDP) Facebook community. The IDP Facebook community—disabled people and our allies—grew to 51,000+ members. Our community members mostly identify along the spectrum of disability, including “Invisible Disabilities®”* —broadly characterized as “hidden” or “non-visible” physical, emotional, or mental impairments.

Our community was administratively removed by Facebook on July 30, 2016, because of claims of trademark infringement filed by the “Invisible Disabilities® Association” for their trademark of “Invisible Disabilities®” (US Trademark Registration No. 4315808, April 2013).

While we mourn our community, we are also outraged by the silencing of disabled voices that this trademark commits upon all people who identify as having an “invisible disability”. Can you imagine the trademarking of racialized, gendered, sexualized, or classed identity categories? “Invisible Disabilities®” is an identity category that belongs to people, not to a consumer brand.

At this time, we are certain of one organization shut down as the result of trademarking “Invisible Disabilities®”, but others are now coming forward. We must ask the questions: “How many activist organizations committed to disability justice will be shut down next as a result of a now-owned disability identity?” “How does trademarking disabled identities affect the world’s largest minority and the resources an already vulnerable population needs?” And, “Should an identity category ever be owned?”

A change.org petition calling for the cancellation of the trademark, “Invisible Disabilities®”, was created by Jane Doe Crips (a collective of many existing communities coming together to speak out against this injustice).

-The Invisible Disability Project Community

@EndInvisibility

*We have included the “®” symbol throughout this press release since this is an identity that we recognize belongs to “Invisible Disabilities® Association”, and fear that its omission could result in further repercussions.

Make sure to check out the IDP mission statement to learn more about them. As of this posting, facebook has reinstated the IDP facebook page. Go over and give it some love.

I have tried to reach out to some people on the Board of Directors at the IDA for comments but, despite supposedly welcoming comments, they refuse to respond. The same can be said for IDA in general as they have posted nothing at all anywhere regarding this situation and, in fact, have gone to the point of blocking people on social media who have questioned the trademark.

In speaking with some of the other activists on Twitter having conversations about this situation, we have all agreed on many things. For the sake of our identities, I have chosen not to reveal who was involved in these conversations.

IDA is cishet, heteronormative, and exclusionary to those who want to open up more conversation about sexuality and illness if that sexuality is non-heterosexual
They’re super white and not really opened to advancing the cause of our disabled friends of color, and this is represented in their board
This organization echoes white savior theory
IDA refuses to discuss mental health issues as invisible disabilities
On a personal note, up until recently I was friends with someone at the organization until she started using her account tied to them to spout white supremacist hatred, which completely goes against what our organizations should be working towards
Any organization that needs to block those who criticize them should not be running
- The fact that the IDA does this is an example of infantilization or showcasing those of us with disabilities for funding – play nice, be the gracious, grateful pet we expect you to be, and you’ll be allowed in the dogpen, you may even get a squeaky toy– as long as we approve it first
How the board members on the IDA have handled this crisis situation (from a social media and brand management perspective) shows they’re not ready for the big time
What in the world gave the USPTO the right to allow an org to trademark/servicemark a term that’s been around since the early 1900s?
The ONLY reason to TM “invisible disabilities” is to stop other groups using it, including on educational & fundraising material and the fact that IDA has used this to shit on people they know are unlikely to have the means to fight back is incredulous
By listing blogs as part of services covered by TM, meaning they could get blogs BY us pulled down
This is a US trademark/servicemark, meaning that IDA cannot touch organizations abroad at least so thank goodness for that

There is a big lesson in this for those of us looking to help others – intersectionality and not being ableist and exclusionary to those you’re trying to ‘help’ with your services.

Are Our Flaws Really Negative?

Posted on August 11, 2016December 5, 2021 by Grayson

Identify one to three of your biggest flaws and write below all the ways these have served you well to help you foster greater self-acceptance, in spite of your imperfection.

For example, your impatience may help you be persistent, enabling you to do well in your career; and your sensitivity may contribute to your power as a performer.

Did this help you feel any differently about your flaws? How might it affect your actions if you remembered these things going forward?

I will be the first to say that I have a lot of flaws… but I will also be the first to admit how important these flaws can be to my health and life.

I help people maybe a little bit too much.

I tend to be the first to be swindled out of money by people needing it – I used to be the person everyone borrowed money (or things) from and then they’d conveniently forget to pay me back. Because of that, I tend to only give money to people due to illness issues now. On the positive, this helps me to help others which I love doing. I also know that it really does make an impact to those I help.

I am stubborn.

Stubbornness is often seen as a flaw, but I also believe that it is a gift. It has helped me to protect myself from abusers, practice self-care, and get the right treatments and diagnoses.

I take no shit.

This could probably be a part, really, of being stubborn. I tend to give people only a few chances. If they are dismissive or negative to me about my illnesses or life, I drop them. While this means that I’ve lost friends – and, in turn, lost out on being able to participate in some cool events due to refusing to interact with certain people – it also means I’m being more true to myself. This helps me embrace myself more in addition to having other awesome people appreciate my truthiness and badassery.

What are some of your flaws? What are some positive things they’ve done in your life?

PS: Today we’re leaving for the JA Conference East in Philly. I will be slower to respond to things until Tuesday-ish. T is coming with me so we’re taking an extra few days to visit friends and family in the area – and celebrate our wedding-versary.

Experience: a poem by Gen

Posted on August 10, 2016December 5, 2021 by Grayson

My sweet new friend Gen, a fellow JIA warrior, wanted to share this poem with everyone. It’s something that immediately struck a cord with me as I read it. It is strong in imagery, pulling the reader in, and general badassery.

“Experience”

I can still feel the tremors. My veins matched the purple décor of the curtains meant to shield an individual reality. I’d grown fond of the beeping machine reminding me my heart was still beating even if I couldn’t feel it. An empty room accommodated for an intended short stay, which had turned into what seemed as an eternal abyss. As I looked around, to what I didn’t know then would be a mirrored image of years to come, I naively grouped it all as one word- experience.

Beep beep. An experience I had not asked for yet was forced to face.

Perhaps there was a reason why I choose – experience. Everyone claims to have it, yet very few know its true connotation. Yet in that moment I had learned that experience isn’t a glamorous adjective of the untouched- but rather an undesired side effect of the brokenness. This particular experience had been the side effect of many years of wrong choices. The emptiness of the room reminded me that those who I had chosen to experience life with, did not share this life experience with me.

Beep beep – you are still alive the machine reminded me.

Experienced doctors faced with an experiment. If experience did indeed make you bright- why did the room seem dulled by uncertainty? Clouded by my choices, enlightened by my mistakes. The people I defended so strongly disproved themselves so rapidly- Experience. The pain I assured I could not handle numbed my discomfort- Experience. The young girl, aged by experience. I can still feel the tremors.

Beep beep- you are still alive the machine reminded me.

Beep beep- echoes in the empty room whispered “This is the cost of experience”

Shame on the Invisible Disabilities Association #notabrand

Posted on August 9, 2016December 5, 2021 by Grayson

I saw some discussion regarding the Invisible Disabilities Association on Twitter and decided to take a look.

Turns out that the IDA trademarked the term ‘invisible disabilities.’ Wayne Connell has somehow decided that he owns the term invisible disabilities. This is not true. Since the use of that term goes back to the early 1900s, I’m not quite sure how the US Patent Office approved that.

Once they did that, they got the Invisible Disability Project kicked off Facebook for trademark violation after sending IDP a cease and desist letter.

So far, the IDA Twitter page has not actually responded to people but began to block those of us speaking out about this subject and asking for reasoning or clarification. Even board members are getting in on things.

How sweet.

We cannot allow this to continue. How long will it be until the IDA decides to come after those of us who blog or write about our invisible disabilities? How long until they decide those of us who make our living off of work related to our invisible disabilities?

We cannot allow this to continue. Please sign this petition!

Meditation Monday: Meditation Can Help Chronic Pain

Posted on August 8, 2016December 5, 2021 by Grayson

I talk an awful lot about the benefits of meditation for my chronic pain. I thought it was about time to talk a little more about the science behind why I feel that way – aside from meditation being pretty badass.

First, we need some definitions…

Chronic pain: any pain lasting for more than twelve weeks
Meditation: a variety of mindfulness, personal focus, and introspection techniques
- It’s important to note that, since there is such a variety in meditation as a whole, that one definition really doesn’t encapsulate much BUT some types of meditation involve:
  - Deep breathing
  - Guided imagery
  - Walking
  - Yoga
  - Vocalizations or chanting
  - Scanning the body

What can meditation do?

Increase in gray matter
Decrease activity in the amygdala (emotional stimuli center in the brain, especially known in Post Traumatic Stress)
More focus
Increase happiness
Lower stress
Lower anxiety
- Including social anxiety
Lower depression
Better sleep
Improve self-awareness
Improve fibromyalgia symptoms
Improve empathy, compassion, and interpersonal caring
Improve sex life
- Another source
- Yet another source
Lower blood pressure
Lower addiction tendencies
Improve emotional intelligence
Improve memory retention
Lower sensitivity to pain

Lower sensitivity to pain? What?

“Meditation teaches patients how to react to the pain,” Zeiden said. “People are less inclined to have the ‘Ouch’ reaction, then they are able to control the emotional reaction to pain.” He explained that the meditator learns while sitting on the cushion that pain is fleeting and doesn’t deserve such a strong emotional reaction. (source)

This all has been shown to be especially true in chronic back pain.

I’ve been meditating on and off since I was about twelve. There was a Cosmo article I read about how yoga and meditation were good for our minds and bodies, so I got into it. There was even a point where I could do headstands up against the wall.

If only selfies had been a thing at the time…

I definitely fell off the wagon of meditation several times. Back in 2012, when Laura passed away, I got back on the wagon for a while… until I didn’t. Towards the beginning of 2015, though, I found the Buddhify app and fell back into the wagon hard – so much so that the creator of Buddhify, Rohan Gunatillake, interviewed me for his book, This Is Happening:

Mindfulness also shows me that even the hardest pain of the most difficult emotion is just a temporary thing. Noticing that change has made a massive difference. The pain is still there but now I can even be grateful for it. I now have the self-awareness to notice any discomfort and itching before it becomes full-blown pain. That’s quite a change from when all I could do was be angry and resentful.

Mindfulness has really helped improve my relationships which previous had been quite difficult. I guess that working on being compassionate to myself means that I’m able to be more compassionate to others. That’s also how I see all the blogging I do. Sharing my own story and struggles with others through blogging and other social media is an expression of my compassion. It’s part of my practice. (122)

One of the things I love from this chapter – and, indeed, every interaction I have with Rohan – is how very appreciative and caring he was about some of my thoughts:

I’ve met a lot of mindfulness experts in my time. But as she is someone who has lived with pain for the majority of her life, I’ve never heard as clear or as real an articulation of how mindfulness helps us transform our experience of the difficult as the one Kirsten shared with me. (122)

/SWOON/

One of my favorite things about meditation is just how restful and rejuvenated I feel when I take part in it. While it can be difficult at times, Buddhify really helps me to dive in even with difficult emotions.

I really enjoy meditations that allow me to remove the narrative about my pain. One of the Buddhify tracks does this, requiring us to focus on the actual pain instead of the tangents our minds can often create – thinking about what the pain is (size, sensation, location) versus the panic it brings (I can’t go to work tomorrow if I still hurt like this, etc).

Don’t already have a meditation practice in place? Good news – meditation has been shown to help even beginners, so get cracking!

Next week, we’ll look at ways to get started on meditation.

The latest from the rheumy

Posted on August 3, 2016December 5, 2021 by Grayson

The Friday before Oreo passed away, I had a big rheumy appointment. I mean, I thought it was going to be big at least.

Appts with colds = ick btw

Maybe even Michael Bay explosions big.

In 2010, I was in the worst flare I’ve ever experienced. My sed rate has certainly had its ups and downs – as a child, I recall closer to 100 but, unfortunately, my medical records were murdered, so…

I thought that we might have the discussion of the ‘R-word’ at my appointment – remission. But, since my fibromyalgia is still flaring like a bitch, that was the subject of our conversation instead. My fibro is heavily affecting my neck, shoulders, and upper back. Since I am struggling to get relief, we are going to try trigger point injections and acupuncture which, thankfully, are offered under my insurance.

I’m nervous at the prospect of the trigger point injections as I know others, like my sweet friend Kenzie, have had them and did not necessarily enjoy the process. We handle pain well, but damn y’all, I’m nervous. I am excited at the prospect of pain relief at least.

My appointment to even be evaluated isn’t until after the JA Conference East in Philly so the latter half of August. I think I’ll try to get a massage before that to see if that will help for while I travel to and from Philly. Luckily, T will be coming with me so that should help with some things. After all, our anniversary is the Tuesday after the conference, so it works.

I really want to get to the point where I’m not sitting here concerned about my fibro interfering with my life like it has lately. I want to feel as amazing as my labs look.

National Pain Strategy #ISpeakForPain

Posted on August 2, 2016December 5, 2021 by Grayson

A few months ago, the Office of the Assistant Secretary for Health at the U.S. Department of Health and Human Services released a National Pain Strategy. This strategy provides guidance on developing ways to measure pain and its management, improving care surrounding pain, and increasing public awareness of pain in order to destigmatize it.

As pain patients, we know that pain affects much of our lives as well – something that others aren’t necessarily always in tune with. This strategy would help to recognize and promote that to those currently not in the know.

This would also help to lower the people who are on opiates unnecessarily and help them to gain access to other pain management fitting their pain. It is, after all, a part of the initiative to lower opiate abuse.

The National Pain Strategy is a first-of-its-kind blueprint for improving chronic pain care in America, that increases research of pain treatments, medical training for clinicians, and awareness of chronic pain as a disease of epidemic proportions. Without an outcry from patients and advocates, NPS may not be implemented or funded at all. The chronic pain epidemic must be addressed immediately by fully implementing and funding the NPS.

The National Fibromyalgia and Chronic Pain Association, along with The Consumer Pain Advocacy Task Force, have combined forces to create a petition on the White House petition site in order to ask for this to pass.

We need 100,000 signatures by August 12. As of this morning, that means we need just shy of 92,000 signatures in ten days.

I know we can do this if we all sign and share.

What can you do to help?

Sign the petition here and make sure to share on social media (bonus points for using tags like #ISpeakForPain!)
Write a blog post or record a video about it and share that!
Use the photo I’ve created below to share on Insta

Ensuring that this passes will make the world better and less painful for us. Let’s do what we can to make it so.

RIP Oreo

Posted on July 28, 2016December 5, 2021 by Grayson

If you follow me on social media at all, you’ll notice that I’ve gotten hella sad and depressed.

Oreo, our oldest guinea pig, passed away Monday night after needing emergency surgery.

He died in my arms. I tried to bring him back. He was just too far gone.

It’s so sad.

In January of 2015, T found a photo of Oreo and wanted to go see him even though we already had our Jaq and Gus Gus. The shelter he was located in was not really used to guinea pigs and didn’t have the right things to take care of him, from food to the cage setup. They also had him right outside of the dog area and Oreo was very scared.

I don’t often talk about things, but I have some emotional… sensitivities or gifts. Empathy with animals is the big one – I think because I had to tone down the human empathy due to my upbringing. I still sense things with many people but have blocked a lot.

Anyway, feeling his fear and worry, I couldn’t stand to see Oreo like that. So I fought to bring him home.

Here’s the Facebook post from January 26, 2015, the day after we saw him:

So I may have just been hella assertive.

This little guy’s name is Oreo and he has been at the Jefferson County Humane Society since the end of September 🙁 He’s close to the dogs, and gets very scared when they all start barking. He’s also in a chilly area that could potentially cause more URIs. We went and saw him Saturday, and fell in love.

I found out today that our apartment complex has a two pet restriction after getting a sad call from JCHS that we couldn’t take Oreo due to that. I think honestly it is because they allow cats. I can understand how too many cats in an apartment would cause a lot of extra clean up once the owners move out… but a caged animal like a guinea pig?

I brought up fish, which are also caged animals, and was like do you allow only two fish?

I felt pretty good about it.

Needless to say, I won the battle and Oreo gets to come to his furr-ever home tomorrow night

Within a week, he had settled in with T and I – though he was very nervous.

We quickly found that he did NOT get along with Gus Gus, but fell in love with Jaq.

Oreo’s owners prior to being at the shelter had allergies. He was always by himself and wasn’t handled much. As a result, he didn’t know how to act like a true guinea pig. That changed as he and Jaq got to be best friends.

He quickly also learned how funny it was to pee on me.

He even followed in T’s footsteps and started learning about baseball.

He would help me try to wake T up from weekend naps…

And then give up.

And then enjoy snuggles with the biggest smile.

He and Jaq and Gus tried to get along, but Gus doesn’t play well. Still, it made for some cute pictures.

Jaq and Oreo would groom each other…

And snuggle together…

And explore together.

Oreo was the first piggie to brave the kitchen, too!

He always took it upon himself to protect Jaq.

They were inseparable.

Oreo was incredibly photogenic.

T got me the sweetest Christmas present – a drawing of me and all three of our babies.

On his home-a-versary, we fed Oreo a ton of his favorite – red peppers.

He was involved in politics…

And patriotic…

And always promoted healthy body image…

He was grateful…

And he was an amazing snuggler.

When Oreo had his first bladder stone surgery in April, it was hard on Jaq. He visited often until Oreo was well enough to go back home.

He and I watched Ghost Adventures and more together.

We had to feed him baby food.

He also enjoyed eating piggie wipes.

He was so happy when his incision had healed enough to have big snuggles.

And enjoyed sleeping in the sun.

He started behaving in a way that showed the pain relief from this bladder stone, running between T and I looking for scritches and snacks.

He would even skip us and wait by the fridge or in the kitchen for noms.

On Saturday, he was still full of loves and snuggles and popcorns.

On Monday, we took him to the vet because he thought he was impacted with the poos. It turned out that he was trying to pass huge bladder stones lodged in parts of his body.

I will always hate that our last real picture with him was at the vet.

When we brought him home, he had a really hard time coming out from the drug-induced sleep. Around 10 pm he started to breathe funny. I started to pet him and talk to him.

Then he just stretched out and stopped.

I tried to wake him up, to bring him back. I did CPR and mouth-to-mouth. I woke T up and we both tried while crying.

Neither of us really slept. We held each other and cried all night. And in the morning, we did it again.

I somehow knew this was coming. I had pain in places he hurt. I kept having nightmares. I kept thinking what would happen if one of them passed and it was always Oreo in my thoughts.

The nightmares are gone, but I’d keep them if it would bring him back.

On Wednesday, we brought him home for the last time.

I love you so much, sweet Oreo. You brought so much love and laughter into this home. You grew from a scared and worried boy into one of the most trusting and approachable pets I’ve seen. You were so amazingly sweet and kind. Even while you were in pain, you were focused on your buddy, on being happy-go-lucky, and on love.

I will miss you every single day until you welcome me over the rainbow bridge.

Love Your Body

Posted on July 25, 2016December 5, 2021 by Grayson

As an act of kindness to your body, write below one thing you appreciate about each part you usually criticize. (If you feel inclined, you can take it one step further and say these things to your body while looking in a mirror.)

You might not love your legs, but they get you from point A to B; you might wish you had thinner arms, but they allow you to hug the people you love and hold your baby.

Do you feel better able to treat your body with kindness after doing this?

I love my shoulders and neck – their ability to handle pain but still function is impressive and admirable.

I love my legs that work so hard to support me, even when they feel like death.

I love my arms and the freckles they display.

I love my swollen and painful hands because they allow me to cook, write, design, snuggle, and interact with the world around me.

I love my big butt because it’s cute.

It wasn’t super easy to start this but, once I did, I started to think about more and more things than I had anticipated. I’ve never really hated my arms, but never really embraced them either.

The irony!

Have you done this exercise? What did you discover about yourself?