• Luminous Beings Are We star wars disability ableism discrimination chronic pain fandango chronic illness chronic fatigue syndrome ehlers danlos syndrome invisible disability invisibleillness ehlers-danlos syndrome ehlers-danlos ableism discussion cinemark west mortreport •

Luminous Beings Are We

image

I’m tired.

No. I’m exhausted.

I’m exhausted by the fact that I have to fight – verbally, physically, emotionally fight – to be recognized as a human being worthy of accommodations in public places.

Quick, here’s a thought: when you think of the Americans with Disabilities Act (ADA) and making accommodations for those of us who are disabled, what comes to mind? If you’re a business owner, you most likely immediately associate the ADA with not getting sued – as in, “I need to make my business accessible so that no one takes me to court over the ADA.”

If you’re an able-bodied human, you probably don’t have to spend too much time thinking about accessibility at all. Maybe you see the blue and white wheelchair sticker stuck on the outside of the door and give the business a thumbs up for being accessible before moving on.

If you’re disabled, though, you realize that disability accommodations are generally not actually created by or for the disabled.

Yeah, you heard me. They’re not. Moreover, they specifically do not seem to exist for those of us who have what’s called an “invisible illness.” Ehlers-Danlos Syndrome (EDS), my degenerative disease, is an invisible illness. EDS is a collagen disorder that causes my body to create mutated collagen at a genetic level. Collagen is in approximately 85% of the body’s systems, from your skeleton to all of your organs to your venous system and even your brain. EDS manifests differently for each patient affected, but my primary symptoms are chronic, widespread pain and joint dislocations from minor movements (like sneezing.)

Though I do often walk with a cane and have to wear braces to keep my joints in place, I don’t always. Some days I can’t bear weight on a cane because my wrists are dislocated. Some days I can’t keep a brace on because my skin breaks out into hives from the contact. (Yeah, collagen’s in your skin, too.) This means that I may be hugely symptomatic, but in ways that cannot be visually identified. Unfortunately, our society still persists under the archaic and ableist misunderstanding that disability requires a wheelchair. (I qualify for one of those, too, but my physical therapist won’t wrist me a prescription until I quantify my loss of mobility and suffering to him. That’s another post about ableism, though.)

Long story short, just because a place of business has a wheelchair ramp up into the building doesn’t mean it’s actually handicapped accessible. (Have you ever tried to open a heavy door with dislocated wrists? It’s impossible. You have to wait for someone else to show up to open the door for you.)

Knowing that most venues don’t have appropriate accessibility for the disabled, I have to do a lot of self-advocacy to maintain a social life – asking for disability accommodations and fighting prejudices about how I don’t look disabled enough to deserve said accommodations.

Which brings us to Star Wars.

Many of you may know I’m a huge Star Wars fan – the Imperial Crest and Rebel Starbird were my first two tattoos. I slept under a huge poster of Fett’s helmet my senior year of high school. When they released the prequels, I harassed a local fast food restaurant until they gave me their huge door sticker of Threepio. My first car was nicknamed the Tantive. The list goes on, but suffice to say, like my nerd brethren, I was absurdly excited for the new Star Wars movie.

…But here’s where my disability comes into play. Buying and reserving handicapped accessible seats in the theater wasn’t an option for my local theater, Cinema West in Petaluma, California. Unfortunately, standing in line for hours isn’t physically an option for me, either. My hips would most assuredly dislocate, causing a chain reaction up my spine and down my legs. We’re talking emergency room status levels of pain. Oh yeah, I have dysautonomic symptoms, too – my autonomic nervous system doesn’t do the background regulations in my body that it’s supposed to.  Standing for too long causes blood pressure fluctuations, a rapid rise in my heart rate, and extreme dizziness that has caused me to faint on at least one occasion. That’s part of why I have a subcutaneous heart monitor implanted.

So, since my local theater didn’t have the option for me to purchase and reserve disabled seating, I knew I was going to have to go into the theater and ask about whether they’d be willing to accommodate me. First I tried calling, because one trip to the theater was an expenditure of spoons for the day. (Google the Spoon Theory if you’re unfamiliar with the term.) No one picked up, so I headed in and spoke with the manager Jaime. Jaime let me know that he was unable to make any accommodation decisions, so he’d pass my information along to Stephanie, the theater’s main manager. He assured me she would be in touch with me that same day.

Since I hadn’t been contacted by afternoon the next day, I knew I was going to have to make a second trip to the theater. (Goodbye, spoons! I hardly knew ye.) I knew the week was going to be spectacularly busy for theaters, so I wasn’t holding it against management that they hadn’t made contact with me. When Stephanie came to the counter, I explained to her my myriad of health issues and why standing in line simply wasn’t an option for me. I asked her if there were any solutions to the problem so that I could see the movie on opening night, assuring her that if necessary, I could provide medical information to prove my disability. (Hello, institutionalized ableism, let me prove my disability to you.)

Her first “solution” was to tell me that my boyfriend should wait in line for me and I could meet up with him after he had saved our seats – sure, that’s one solution. But it also requires I be separated from him for a vast majority of our date, which is punishing the disabled for their inability to adhere to able-bodied standards.

At this point, Stephanie flat-out refused to help me come up with any solutions. I asked her if it was possible to make sure two accessible seats were set aside for myself and my boyfriend, an option that was unavailable to me through online purchasing.

“What will everyone else think if we set aside two seats for disabled people?” Stephanie asked me.

“Considering they have the entire rest of the theater to choose from, I expect they’ll be alright,” I replied. “Also, you’re specifically setting aside D-Box seating as reserved, so how can reserving disabled seating be outside of that same concept?”

She didn’t have an answer for that, but continued to refuse to make any sort of accommodations or offer solutions for the theater she purportedly manages. Just to clarify, I made sure to ask.

“So, you’re telling me that you’re absolutely refusing to work with me on disability accommodations whatsoever?”

After a long pause, Stephanie shook her head and made a decision. “I’ll make sure to let the ushers who are cleaning the theater out know that two seats need to be set aside and accessible for you.”

Extraordinarily grateful (to be treated as a little more than a lesser human), I asked what I could do to make her life easier as a manager making accommodations for me. Stephanie asked me to show up 30 minutes before my 10:30 show time, so I assured her I would be there at 9:45 with no issues.

And we were. Slowly but surely, with dislocated ribs and subluxed vertebrae, I limped my way into the building, asking for Stephanie. Multiple ushers completely ignored my questions about finding her, replying that if I just kept my eyes out, I would see her. (I’ll give you a moment to imagine what it feels like trying to find someone in a sea of hundreds of humans while using a cane to walk.) I finally tracked down an usher who was able to find Stephanie for me.

As she approached us, her eyes went wide. “Oh, I hope they saved your seats,” she said. “I completely spaced it.” As we walked into the theater – which was already completely packed – there were absolutely no disabled seats open for me. Without another word, Stephanie disappeared and my boyfriend and I were left to stand awkwardly with an usher, looking at the very full theater.

Standing there, humiliated and hurting, I felt the acrid sting of tears along my lash line. Despite my self-advocacy, I had been completely forgotten – relegated to invisibility and not worth the effort of inclusion because of Cinema West’s lack of disability training and policy.

Since I have an invisible disability, I know that many people sitting in disabled seats may suffer from the same levels of discrimination and ableism that I do, simply because they do not fit our societal expectations of what should constitute disability. The last thing I was going to do was ask someone to move from the accessible aisle. Fortunately for me, an able-bodied gentleman sitting in one of the disabled seats took one look at my cane and graciously offered to move. He collected his belongings and went out of his way to be kind to me.

Realizing we had no 3D glasses, I asked an usher about how I could procure a pair. Without missing a beat, she told me that I needed to walk all the way back to the front of the building to get the glasses from outside. Have I mentioned that mobility is an issue? I’m pretty sure I have.

Cinema West, not only did your manager fail to deliver the disability accommodations she agreed upon, but she disappeared like a coward and left me to deal with the repercussions. She treated me like I was invisible and not worth the time or effort required to make it so that I could have a beautiful, magical movie moment – like the other able-bodied humans in the theater. She left me in a position of abject mortification, and she forced another paying customer to be inconvenienced because of her failure.

Cinema West, here’s the thing: instead of looking at accommodations as a frustrating liability that you have to take care of in order to avoid litigation, why don’t you treat the disabled as another huge, paying market who would show up more often if you made your venues accessible and your staff appropriately trained? Disabled humans make up approximately 20% of the American population – that’s 1/5 of Americans that you are not catering to simply because it’s too much effort. Bring on disabled consultants to help you – consider my hand raised high for that effort – and lead the charge for inclusivity.

Fandango, you can step up to the plate here, too. If I have an option to purchase disabled seating, I will take it, thereby avoiding large chunks of this issue to begin with.

Disability access affects our lives deeply. I am tired of crying myself to sleep at night because I have to fight to do something as simple as go see a movie. Let’s call this what it is: corporate and personal discrimination against the disabled. Stop treating us like we are less than human. 


Cinema West can be contacted via their website or their Facebook page.  

EDIT: I was given incorrect information regarding the owner of the theater that discriminated against me. I am offering a full apology to Cinemark and I have edited all social media posts to note that it was Cinema West in Petaluma, California that discriminated against me. Repeat: Cinemark DID NOT DISCRIMINATE. Cinema West is the perpetrator.


report
4212 notes / 4 years 7 months ago
Luminous Beings Are We
I’m tired.No. I’m exhausted. I’m exhausted by the fact that I have to fight – verbally, physically, emotionally fight – to be recognized as a human being worthy of accommodations in public places.Quick, here’s a thought: when you think of the Americans with Disabilities Act (ADA) and making accommod...
image
Reblog if you have a chronic illness. Whether it be mental, physical, treatable, degenerative, sever...
chronic pain chronic illness fibromyalgia chronic fatigue syndrome ehlers danlos syndrome
I go to bed tired, I wake up tired. I’m in pain all the time. No it does not stop. I eat and feel nauseous, I don’t eat and I feel nauseous. So don’t get pissy at me if I’m not smiling and happy all the time. I’m doing the best I can and you have no idea how much effort...
Just to make it clear
You can be able to walk & still need a wheelchair.
When you’re sick, your life is supposed to change. You’re supposed to want to settle old arguments, fund charities, commit random acts of ki...
Accepting your illness as a part of you is not giving up; it is merely learning to love the hardest part of yourself to love, and that is tr...
disabled people who are unable to work are just as valid and worthy as disabled people who can work
chronic illness ehlers danlos syndrome hypermobility syndrome spoonie life mobility aids
I'm telling you this because I don't think you hear it enough...
It’s okay to be sleepy, lethargic, foggy, and unproductive. It is even okay to enjoy it, because sometimes something as simple as a comfy place to rest your mind and body is all you need. This in no way makes you lazy. When you spend every day fighting for control of your own body you deserve...
chronic illness chronicpain elhers danlos syndrome
Hello! I’m Annabelle, and I have a rare genetic condition called Ehlers Danlos Syndrome, which means the collagen my body produces is faulty. This has such a wide range of ef...