Category: ableism

Michael J. Fox and Rebuking Ableism

Posted on by Grayson

Person off-screen: “The sad sack story is Michael J. Fox gets this debilitating disease and it crushes him.”
Fox: “Yeah, that’s boring.”

On May 12th, Apple TV is releasing Still: A Michael J. Fox Movie. I am SO excited to watch this look back at not only his career but his early Parkinson’s journey.

Like many people, Fox felt like he had to hide his condition from the public. No one outside of his family knew for a long time. I’m sure there were many factors to this, but chief among them is ableism.

People won’t hire disabled folks for roles, assuming they can’t do specific actions or out of worry about what to do if the star’s condition worsens. Instead of being able to show up authentically in the workplace, many actors with disabilities have to hide them in order to continue working. In the meantime, they get to deal with tabloid commentary about their weight, appearance, family life, and more.

Perhaps what I’m most excited about is the interaction I opened this post up with – that focusing on a pity party or rooting this film in ableism is boring. It is! “Pity is a benign form of abuse,” Fox has said. He’s not wrong. More than that, films that lean that way act as though disabled folks are already dead, that our lives hold no more meaning.

As he says in the below around the 1:50 mark, “I love the idea that disabled people can be assholes, too.”

It’s beyond refreshing to see someone so well-known rebuke that idea and focus on sharing what real life with his disability is like. We’ve seen that with celebrities who have recently come out with their disabilities, including Selma Blair. It’s nice to see it coming from someone who played such a pivotal role in many of our favorite shows and films from the 80s and 90s.

That’s doubly true when the Michael J. Fox Foundation does such amazing work. This week, they announced a breakthrough in the search for a biomarker for Parkinson’s – “a biological test for Parkinson’s disease that demonstrates high diagnostic accuracy, differentiates molecular subtypes and detects disease in individuals before cardinal movement symptoms arise.” This will lead to early detection and treatment as well as a better understanding of this condition. It will save lives, and it could very well be an important stepping stone to a potential cure or at least better treatments.

Fox had this to say about the discovery: “There are many ways I am involved with the work of the Foundation, but I come to this result first and foremost as a Parkinson’s patient. I am deeply moved by this breakthrough and endlessly grateful to the researchers, study participants and funders who have endeavored to bring us this far. When we started PPMI, we weren’t casting about for fish — we were going after a whale. Now, here we are. Together we are making a cure for Parkinson’s inevitable.”

Fox has won multiple awards for his activism, but I missed him receiving the Jean Hersholt Humanitarian Award four months ago. If you did, too, it’s worth a watch:

I am so excited to see Fox being more present and better recognized for the work he has done and continues to do.

To close this out, I’ll share another one of my favorite lines in the Still trailer – one that likely won’t surprise you, given the name of this site.

Person off-screen: “What did it mean to be still?”
Fox: “I wouldn’t know. I was never still.”

On The Passing of John McCain

Posted on by Grayson

black background with yellow textbox and black text: On The Passing of John McCain Not Standing Still's Disease

Senator and former POW John McCain died yesterday.

Scroling through social media, I’m dismayed. I keep seeing statements from people who have forgotten McCain was not a man of the people. And, me being me, I’m upset by that. McCain was not a good person, at least politically, and we need to remember that. He did a lot of harm to communities – that’s his legacy.

I don’t have to be sad that a person who spent his life harming communities I’m a part of or I support died. This man is not some amazing person to put up on a high pedestal… unless you want to praise the systematic oppression of anyone who isn’t white, cishet, rich, conservative, American-born, and the right kind of Christian.

It’s okay to speak that truth. In fact, I would say we have a duty to do so because the GOP sure as hell isn’t going to take a break from attacking marginalized communities. They’re still scheming while tweeting out their sympathies.

McCain was horribly racist. He used racial slurs and continued doing so, though less publicly. He played a major part in selling sacred indigenous land to mining companies and golf courses. He also voted against MLK day, later saying he wished he hadn’t. Of course, McCain also elevated Sarah Palin which essentially co-founded the birther and tea party movements. That led to the administration we see today, especially with prominent birther Trump in charge.

Don’t forget that this man thought the ACA repeal effort – the one disabled people put lives on the line to stop last year – didn’t go far enough. He fought like hell to stop the ACA from being put in place. Instead of working to fix it, he campaigned on repealing it after it became law. It floors me that someone who helped with the ADA and tried to pass a patient bill of rights could also be so cruel.

On a more personal note, I didn’t have insurance coverage as a child because my mother sucks. Because SJIA is a pre-existing condition, I couldn’t get insurance on my own covering my SJIA until the ACA passed. It took a few years for me to get a job with an insurance option. I can’t imagine having had to wait until then to get care.

I could have easily died if McCain got his way, either by defeating the ACA initially or repealing it. MANY people would have. I don’t have to applaud him for making it through unspeakable things when he would’ve forced many of us into not dissimilar situations.

He could have saved disabled people. We could have stayed on home instead of being arrested. We could’ve taken care of ourselves instead of spending energy on basic human rights. All he had to do was say he would vote against it. Instead he wanted to pull a publicity stunt at the last second, telling reporters to ‘wait for the show.’

While I cried in bed, wondering what the fuck me and my disabled siblings were going to do without the ACA, McCain sat grinning on the inside like a son of a bitch. He did not care that his cavalier attitude was harming people. We were confronted with losing lifelines and he treated it like a game.

I stopped seeking diagnoses for things going on. I was afraid that whatever is going on neurologically or with my heart would get diagnosed. Without protections from the ACA, I could easily lose the ability to get any current diagnoses treated. McCain literally played a part in my poor health last year.

I won’t do about McCain’s legacy. I also won’t pretend that being a POW means he was a good person. What he chose to do when he got home and involved in politics is important. He chose to harm. He was a good republican.

I won’t speak well of someone who took pride in being a selfish asshole. If you choose to do that, you should re-examine why whitewashing history is a hobby of yours.

The Fight Ableism Prayer

Posted on by Grayson
Sometimes I get really tired in my fight against ableism.
It’s hard especially when our government makes it clear they don’t care whether we live or die. One of the biggest ways they show this isn’t just with the AHCA, but with how we are treated when we try to stand up for ourselves.
In the fight against bigotry, we may lose sight of why this matters and why we need to fight for ourselves and our future. People without chronic conditions or disabilities generally aren’t prepared to hear about the issues we face, especially because equality can feel like discrimination when you have privilege.
I developed the prayer below based on the Lord’s Prayer to help reinforce my inner strength to fight the ableds. I hope it helps you, too.
O, universe, all around us,
Help me fight the ableds.
Help them to listen more than they talk.
Let them learn how to be allies,
instead of harming, assuming, and speaking for us.
Give us this day our daily meds, physical therapy, and grounding exercises.
Help oppressors understand our tone,
As we don’t tone police ableds and other perpetrators of oppression.
Lead us not towards ableism and harm in our communities,
But help us identify the -isms and -misias therein.
Disability is a naturally occurring state.
The future will be accessible.
Nothing about us without us.

 

What does an Autoimmune Arthritis cure look like?

Posted on by Grayson

Oftentimes, I find myself wishing I was either better or worse off health wise. Obviously, the clear choice is that I’d like to be better, to be ‘normal’ but at least if I was worse I could get disability and maybe that would help things. I find a lot of my energy disappears to work, and while my current job is 99% less stressful than my last one, eight hours of work a day is still eight hours. My body hates sitting most of that time in those horrible office chairs, especially with whatever in the world is going on with my spine lately.

I have often said that I feel as though I have an advantage in being chronically ill, having gotten sick at age 5. I can barely remember a time when I could run around and play like a crazy little kid without wiping myself out. Don’t get me wrong – I abso-f’ing-lutely hate this disease. If Arthur was real, his death would be so slow and painful and he’d probably end up looking like a Jack the Ripper victim. But I wonder, if I’m around when a cure is developed, how will that change my life?

I’ve never been normal, in health or anything else. How much of my personality is based on my illness? Is my inability to really blend in a result of the fact that my body stands out?

In any case, my weird philosophical whatevers aside, I asked a question a bit ago on what a cure for AA would look like. I didn’t get too many responses, but the ones I got really made me think.

Tiffany, CEO and founder of IAAM (who developed the term ‘Autoimmune Arthritis’ btw), offered her thoughts: “Realistically speaking a cure would be to put us into remission – so no more symptoms and you just stop wherever you are in damage.” She talked about how she misses participating in sports, and how she longs for the day when she can do so without being sent into a horrible and long flare.

Jennifer of The Feeding Edge/Art Apple a Day also shared her thoughts. Despite being in ‘medical remission’ from her AS, she still deals with flares and fibromyalgia. She very quickly points out that remission in Autoimmune Arthritis is not like it is with other diseases like cancer, where your body is completely free of disease. Like so many of us, she craves for a cure not only out of personal reasons but to benefit the hundreds of thousands of children who develop these diseases: “I’d be thrilled for a cure – in any form it appeared in.”

Heather, who commented on the initial blog post for this topic, is facing several surgeries right now as her multiple autoimmune disorders have terribly taken their toll on her body. For her, a cure means that these issues would need to be fixed. There is enough damage already caused that Heather, like so many other chronically ill people, needs a cure that doesn’t simply stop the disease, but helps to undo this damage.

Lorna shared not only her thoughts on the subject, but her husband’s too. For her, she would be happy to just have the disease stop attacking her. Like me though, she wonders how she would act and is afraid she would party too much. Her husband would love the body she had before the disease back – without the deformed bits and steroid-induced poofiness – but her personality to stay exactly how it is now, with the knowledge she’s gained from her experiences.

In all actuality, I completely agree with Tiffany. Cures for diseases don’t go back in and fix the permanent damage done. And, to be honest, the thought of being able to run around and play sports or be more active without feeling like death for it… that’s all I could ever hope for. To be honest, I don’t know how different I would be then… But I know that the pains with this disease are the worst. I could handle the damage, because shoot, athletes deal with them all the time. But the ongoing pain, the flares, and the fatigue are just too much to handle.

On the other hand though, I don’t truly know the extent of my damage myself. And wouldn’t it be wonderful to chew some ice and be normal? I may have mentioned this in my initial post on the subject, but as my disease began to get worse, my boyfriend was confident they had made a mistake and that I would be fine. I just had some weird disease that would be cured by chewing ice everyday 🙂

But, damn, like many of the people, I’d just be happy with something that eliminates the bulk of this damn disease from my life. Thanks everyone for your responses. It really is interesting to look at the range of responses here.

___

In closing here, I’d just like to reach out to another person who spoke on this issue, but wished to remain anonymous. He or she said simply said that s/he never thought s/he “could be this sad and feel so helpless and worthless this much in my entire life… but happy to be alive for my kids.”

It is really hard to handle these diseases. We often feel like we are not in control of anything in our lives. Sometimes, the only thing we feel we are in control of – and that’s debatable even at times – is whether we live or die.

I recently went through some of the toughest days I’ve ever had with my Still’s and what I think is fibromyalgia trying to pop up too. Last Monday, I was crying at work. I was in so much pain. I could barely see straight and my breathing was labored. My hands were freezing up, hurting so bad they were shaking. On top of that, whatever the fuck (sorry!) is going on with my back is getting worse, and has migrated from my lower back up to the cervical spine, neck, and also is causing intense headaches. And I get all of that lovely shit (again, sorry!) on top of my normal lower body joint pain. For a few minutes, I thought of ways I could somehow hurt myself more to get relief. Nothing too horrible, you know, just maybe crash the car on the way home… which, with my hands, could have been a possibility anyway right? Then maybe I could get real meds to treat my pain – or heck, maybe I’d end up, you know, not having anymore pain… Shortly before I left work, the pain broke along with my fever. My rash subsided. I was so grateful, but so afraid that it would start again. Crashing the car was still a thought in my mind.

That damn cliche about how it’s always darkest before dawn? Sometimes, it’s true. It’s so hard to make it through. Thankfully, I have so many friends now via social media who understand what this disease forces me to go through. If you’re dealing with these kinds of issues, please reach out to someone – even if it’s just lowly ol’ me 🙂  So many of us go through time periods like this, where we are afraid to tell other people. I didn’t even talk to the boyfriend about this, and we talk about everything. I was too ashamed to admit it to him, and honestly I don’t know what I’ll say if he brings it up after reading this other than just break down. But I can talk to others about similar issues, and it really helps.

If you have the means to, it probably wouldn’t be terrible to talk to a professional… but I hate them. I have trust issues and talking to strangers, for me, just doesn’t work. Every time I’ve tried, it just gets awkward and I can’t deal. And that’s why I write, so y’all get to be my therapists. So I guess a thank you is in order? 🙂

Too, too fast

Posted on by Grayson

I can’t get this vision of me this time next year, in a wheelchair and not being able to do anything that I like to do, out of my head. It’s like all my worries about my health and my biggest fears are being mixed in a nickelodeon spinning around in my head. And it won’t slow down, it won’t stop.

I think all the plaquenil is doing right now is making me sick to my stomach. And the next step is either to play with dosages or pair it with methotrexate. And I really hope it doesn’t come to that. That’s the one thing I’ve told myself I will not take. The small possibility that I might get pregnant while on that is too much to risk to me to feel better.

I guess this is just kind of a ranting post. I’m scared and there’s really nothing that’s going to comfort me. I wish my rheumy appt was sooner. I wish I felt better. I wish that I could shake this feeling that things are going to get worse soon, that I’m going to get sicker as soon as my moving plans in summer happen, that people are going to resent having to help me more, that I’m going to become a burden.

I think I’m just tired and ready for some relief, sleep, wine, a massage, or a nice crying session… which I seem to want to do at work today. And kind of have. *sigh*

I just wish I was normal, more than just about anything right now.

Blah

Posted on by Grayson

I’m tired of being on steroids. I’ve been really emotional and melancholy lately, and I don’t think the prednisone is helping that much anymore. I keep being really existential, and I think I’m having a quarter life crisis.

Also, I just got yelled at in the bathroom for using the handicapped stall by someone in a wheelchair. I was very nice and tried to explain that I was sorry but that my RA makes it hard sometimes to use the other stalls because they’re so much lower. She just rolled her eyes and nodded.

I don’t even know how to feel about that. I was in the stall for a while cause I was crying, which she must’ve heard. Is it wrong to be frustrated that she didn’t seem to understand, or am I just being a baby about my condition lately?

Would you date someone with a terminal illness?

Posted on by Grayson

While rheumatoid arthritis is not classifiable as a terminal illness, there are definitely enough complications that can arise from the disease itself to side effects of medications that can, in fact, be quite dangerous.

If we look at a comparison of HIV/AIDS and RA (note: I’m not saying RA is anywhere near as bad/painful/horrible as HIV/AIDS – people with that disease definitely have it worse – think of this in the theoretical), it’s a similar pattern. We have a person who was (for whatever short time) healthy, who has now been informed of this disease they carry. There is no cure. There are medications, which may or may not be worse than the disease itself/may or may not help you at all. You will become very ill, angry, depressed, unable to do things you otherwise could. Sex becomes an issue, for one reason or another. If anyone within the same time zone as you has the flu/cold/pneumonia/etc, you’ll get it even if you’re just at home.

Slowly, you are forced to sit on the sidelines while you watch your body deteriorate, your mind following.

Would you date something with a condition like this, knowing:

  • You have to watch them hurt and get sicker, and not really be able to do anything about it;
  • You have to help them sometimes do the smallest of tasks, like open a door;
  • You’ll get a front row seat to how they will mentally deal with the disease – will they lash out at you? Become so depressed that they decide life isn’t worth it anymore?;
  • If you’re in it for the long haul, you’ll eventually have to take care of that person you care for;
  • That person might be stubborn and not tell you when things are wrong, and you’ll have to learn to watch for anything out of the ordinary
Is this a burden that anyone should have to take on?
There’s a saying that love conquers all, which in the day-to-day life of someone who is forever ill may or may not be true. Love certainly makes you feel less horrible, but it doesn’t change the fact that you’re in pain and that things probably aren’t going to get that much better very soon.

Chronic Pain and Disney Movies

Posted on by Grayson

Girls with chronic illnesses either detest princess stories where everything ends up okay in the end because they’re unrealistic, or they love them.

My rheumatoid arthritis is the thorny rose patch and dragon keeping my prince charming away. For some, this could be taken quite literally – they don’t date because they don’t feel adequate or are just so ill that they don’t need the extra stress that a relationship can cause.

For others, we are caught in a continuous battle to stay ‘okay.’ We are waiting for a cure that we know, we swear is on the way. But it keeps being delayed, and we stay stuck in our towers – alone.

Alone doesn’t quite fit though, does it? In reality, we are a part of the normal world and we function (sometimes) in it. Isolated probably is a better fit.

I’m around other people, sometimes, and I do have the ability to interact with others. But still, there’s a difference – even if the people around know about RA and how bad it can get. They haven’t felt the pain or the other problems that can arise from a chronic condition. There’s no knowledge of the isolation, the exhaustion. The worst part is, no matter how much you explain it, they won’t ever know.

And so we sit in our towers, staring out the window and waiting for our rescue – one that, for the vast majority of us, we will never live to see. And there’s not much else we can do but wait and hope, and try to avoid the hopeless feelings that are inevitable.

Update on Richelle Golden

Posted on by Grayson

Source: Salem News

The Veterans Administration (VA) is relaxing the rules for veterans who use
medical marijuana in states where it is legal. Experts and activists are calling
the decision an historic event; it will certainly change the position of many
vets currently receiving care, who until now have been restricted under VA
rules, to dangerous morphine based drugs for treatment; pills that are both
highly additive, and deadly.

…

Richelle Golden was ordered to Madigan Army Medical Center where she
arrived in a wheelchair and was promptly treated as a criminal drug user for
using medicine. The support from high ranking officers in the Oregon National
Guard has brought her no favor. She has been charged and denied medical
marijuana. It was the only thing helping her control nausea at the time, and she
became so sick afterward that she almost died.

This new decision is undoubtedly good news in her case, one where it seems
likely that someone on the Army was out to teach a soldier a lesson, and show a
side of humanity that many believe has no place in the service and in the
treatment of those who volunteered to serve their country at a time of
war.

Army Discrimination

Posted on by Grayson

Some days I’m unsure what to write about, so I do searches for terms like ‘rheumatoid arthritis’ and ‘medical studies.’ Today, I ran across an article about my home state, Oregon, and the problems facing a woman with RA in the armed forces.

A 39-year-old mother of four, who was being dismissed from the National Guard on account of her very aggressive RA, is now confined to barracks. This woman, who in the past has had to be in a wheelchair and could no longer work, is now alone, not being able to see her family, because of her disease – or her method of treatment.
Richelle Golden was on many pain medications and still feeling sick and hurting. Her doctor suggested she try medical marijuana – perfectly legal in Oregon. Since she was being dismissed from the NG, she saw no problem with it. Instead of being at home and being able to rest, she is sleeping on a hard bed, in what must be a cold room, with really no assistance at all.
It’s sad to see someone facing such discrimination because of medicine they were rightly and legally prescribed by their doctor. And now the NG is placing her in harm’s way, by having altered her medications and forcing her into an environment that adds stress and pain into an already difficult life.
This medicine can be so useful. For those suffering from eating problems, pot can assist them to regain their appetites (yep, the munchies at their finest). It can help ease pain, but it can also help to relax someone’s mind from all the what-ifs they face. I’m not speaking from experience, because I have not ever smoked pot. Like many others whom this drug would help, I worry about the backlash I might face from the people around me, especially since I do not live in a state where medical marijuana is legal.
I always thought that, if medical marijuana was made legal in Wisconsin (or if I moved back to Oregon or any other legal state), I would partake. It would be nice to find a medicine that is more natural than others that have such terrible side effects. However, hearing of the problems faced by Golden and others – from losing jobs to losing state support, despite the medical legality of the drug – I now believe that I would not try the drug. Until some of the stigma surrounding medical marijuana ceases to exist, those who have to use it will face discrimination and persecution.
I just find it sad that Golden is not only being punished for her marijuana use, but also for a disease that in and of itself is one of the worst kinds of punishment. I would not wish the pain that I, my sister, my cousin, or anyone else with this disease has had to endure on my worst enemy.
For more on the story, click here.