“When all else fails, I’ll always have my family.”
Eliza’s words still haunt me, though it’s been many weeks since our interview. Of all of the RD Project’s models so far, Eliza seems the fiercest, the feistiest (which is saying a lot), but she also seems to be the most disappointed in the disability system we’ve got going on here. Like an overheated bowl of my daughter’s morning oatmeal, Eliza’s truth spills – pours, gushes, explodes – over the sides of her perfectly postured femininity in her sporty-looking wheelchair. Her truth is a hot, delicious mess, one that was bound to happen after a second-too-long of neglect, of turning the other way over and over again when something should have been done sooner, much sooner. Eliza dives right in to the muck, and I’m the lucky bastard who gets to swim alongside her.
“Life is shit; you get over it; then you die,” she starts. This, her credo, I’ll hear at least four more times over the course of the next two hours. Later she adds, talking to nobody in particular, but addressing all people with disabilities (or maybe just all people), “Like, I’m sorry that had to happen to you. I’m sorry that it HAD to happen. Life is shit, right? But the question is: What are YOU going to do about it?” In other words, in the immortal words of Dory, “Just keep swimming.” And that’s exactly what Eliza does. She has a full-time job; owns a home; drives a car; is very close with her parents and her siblings; participates in a ton of extracurricular activities, many of which are within and/or benefit the disability community; she’s currently writing her memoirs and writes for national disability publications; she networks; she dates; she’s sexually active. She lives a completely ordinary life – Surprise! She also has Spastic Diplegia (Paraplegia) Cerebral Palsy*.
With all that Eliza has going on and of all the effort she puts forth to achieve her goals, one of her biggest struggles happens to be within our own disability community, and it doesn’t seem like the struggle will be going away any time soon. We talk, at length, about the hypocritical animosity and caste system within our community that tends to value each person with a disability by how much s/he has suffered. How much s/he can do is measured against how much s/he attempts to do, how much is accomplished versus how often s/he has failed. Unfortunately, explains Eliza, not all disabilities are created equal in the eyes of the disabled and, to borrow a phrase, haters gonna hate.
Even if all our (dis)abilities existed on a level playing field, it seems that a person with a disability who is young, female, attractive, gregarious, and extroverted gets a few extra brownie points toward what Eliza and I began to resentfully and ironically call Disability Privilege. Based on one’s disability score, that person may be granted certain perks in the way of more compassion, kindness, help, attention and even friends from people of all abilities. Because, you see, this hierarchical judgment exists in both disability and able-bodied worlds. The difference, though, is that in the disability world, the caste system begs the question of us all, How disabled are you? How much suffering have you endured?, while within the able-bodied world, it is more often, How uncomfortable do I feel around you? How sad does your disability make me feel?
“I feel like I am never disabled enough,” Eliza stresses. I’ve felt this way too. And, admittedly and ashamedly, I’ve judged other people with disabilities using this same Disability Rating Scale**, knocking a few social points off the level of disability with each body part the person still had. Moreover, there exists in the disability world a certain street cred in having once been able-bodied, knowing what that life is like, and then finally becoming disabled – extra street cred if the disability catalyst was something sudden and tragic. As if to say, If you were born with your physical disability, you don’t know any better, and not knowing what you’re missing almost makes your disability null and void. It’s ridiculous, I know. Ridiculous and unfair and hurtful and totally pointless.
Eliza, describing the disability caste system, then affects a tone I can only describe as high school bitchy, “’Because you haven’t suffered long enough to really know what it’s like…’ That’s complete bullshit!” she throws her hands up in the air. “It’s odd…figuring out who [I am] according to [my] disability. In the outside[, able-bodied] community…well, I am disabled, therefore I am not normal. But when I enter into the disabled world, I wasn’t disabled enough.” She posits this dichotomy next through the lens of an educator, which she also did as the Outreach Coordinator of Youth Leadership at the Silicon Valley Independent Living Center. “How do I explain this juncture, this road?” Indeed, how does she explain to younger generations of disability owners, some of whom have just received their disabilities, that having a disability isn’t that bad and that there is support for them…but only if they qualify, only if they’re attractive and outgoing enough. Life is shit AND you may still be stuck in social disability limbo, forever proving yourself to the small group that is supposed to support you. It’s ironic, she says, how “the world screams ‘DON’T REJECT ME!’ but that’s all the world does, because [I] just don’t measure up.”
She then recounts a story of a man she’d been casually sleeping with; we’ll call him Douchey McDoucherson. Once upon a time, she’d mentioned to Douchey McDoucherson that she was going on a date that evening and that the new guy was scheduled to pick her up at any moment, so she went out to the front porch to wait. Her date arrived in his car, saw her, and then just kept on driving. Going back into the house, she shared the story with Douchey McDoucherson, hoping in vain that he’d help her nurse her wounded ego. But Douchey McDoucherson simply said, “Well, I’m glad no one wants to look at you. I’m glad no one else wants you. More for me.” To hear Eliza tell this tale is to experience the epitome of disappointment, not because her date stood her up after seeing her in all her disabled glory or that Douchey McDoucherson had a foolish way with words. The worst part is that in that moment of feeling broken and bruised, of not measuring up, my fierce, feisty Eliza didn’t have any moxie left to defend herself. She let herself down then. But how, I wonder, can one person bear such an enormous weight of being charged with the task of tolerant educator and patient punching bag? She interrupts the hurt and rage I feel in her honor with a huge, gorgeous smile and reminds me, “That was shit. But I got over it.”
Like many of us, she looks to the media to find a place to fit in, to find people with whom to identify, but only becomes wholly disappointed. “They’re all models!” she hollers. “…not a good portrayal of who we really are.” She adds that many of the wheelchair-bound individuals we see in the media are either not disabled at all (Arty on Glee) or are, but are fairly recent victims of an accident that resulted in a permanent physical disability. It is this second group that is typically at the top of the disability food chain, supposedly placed there to honor their former able-bodied-ness that was cruelly snatched out of their perfectly geneticly pooled hands. Humor aside, of course these types of disabilities – the ones that come suddenly, don’t allow time for preparation or thoughtful decision-making, the ones from which people wake from their fall from able-bodied grace in a hospital room, paralyzed or missing limbs – are tragic. With that being said, I don’t blame Eliza for taking umbrage to their high pedestals within our community; because isn’t it at least equally tragic to never have experienced perfect health and ability at all? So why do our own people seem to denigrate those unlucky enough to know no different from their disabilities? I ask Eliza what she, who’s had cerebral palsy all her life (though she was sent home several times from the hospital as a newborn and infant with the diagnosis of flat feet), wants people to know about her disability journey.
“You know what I want people to know?!” This question has really gotten her going, and her passion hits close to home for me on so many levels. “I want people to know what it’s like going to prom. And, you know, it was my prom…!” She trails off, muttering, “…anyway…I was used to the teasing by then…” She may have been used to the teasing, but the memory of it clearly still burns, so much so that she doesn’t elaborate but instead animatedly offers another example. “Oh! Or, when I realized, at the age of 7, that I’m never going to get married. Or, I’d like people to know how I felt the first time I was called a ‘cripple’. Or” – in reference to the Holocaust – “the fact that my people were the first ones to get gassed***. Or FDR! He didn’t even deserve to be in that chair!” she exclaims, proud and indignant. “He was the only [public] acknowledgment we had. He knew what society’s reaction to [his disability] would be…!”
Seeing the same shade of red she’d been seeing for decades, I heatedly finished her sentence for her: “…so he gave the people what they wanted to see! He chose to present himself to everybody differently, stronger, able!” My proud rage had escalated quickly, but then it was my turn to trail off. “In other words…he wanted to look…not like us…”
“Yeah,” she agreed in a voice barely above a whisper, the passion subsiding, evolving, as our honest, disappointed eyes met. We sat quietly for a moment, smoldering in the same sting of betrayal from all the people who have ever called us “crippled”, for the hypcrotical disability elitists, for all the ruined proms, the harsh realizations, and for all the FDRs. “The more time I spend thinking about it, the more it’s not going to make sense to me.” So she internalizes it, buries it deep and lets it turn into fossil fuel for the fight. “I was born a fighter. That’s just what I’m going to have to do… If I woke up in the morning and knew there were going to be rainbows all day, I’d be like, ‘Okaaay….same ol’ thing…’ But the struggle is necessary. It kind of makes life worth living.”
*”The specific forms of cerebral palsy are determined by the extent, type, and location of the child’s abnormalities. Doctors classify CP according to the type of movement disorder involved — spastic (stiff muscles), athetoid (writhing movements), or ataxic (poor balance and coordination) — plus any additional symptoms, such weakness (paresis) or paralysis (plegia). For example, hemiparesis (hemi = half) indicates that only one side of the body is weakened. Quadriplegia (quad = four) means all four limbs are afffected.
Spastic diplegia/diparesis involves muscle stiffness that is predominantly in the legs and less severely affects the arms and face, although the hands may be clumsy. Tendon reflexes in the legs are hyperactive. Toes point up when the bottom of the foot is stimulated. Tightness in certain leg muscles makes the legs move like the arms of a scissor. Children may require a walker or leg braces. Intelligence and language skills are usually normal.” –National Institute of Neurological Disorders and Stroke
It is to be noted further that, though there isn’t much information past children and CP, Eliza tells me that her illness has, in fact, negatively progressed and her future is even more unknown now than ever because very little research is done on adults with CP. None of her doctors are able to give her a prognosis, so her abilities and longevity remain shrouded in mystery. She says, “I’m only 30. I’m going to make it through the next 10-15 years okay, but I can’t guarantee that at the end of that I won’t be screaming my head off.” In pain? In frustration? In anger? I suppose we’ll find out.
**A Disability Rating Scale is actually a thing. Thanks, Wiki.
***”On July 14, 1933, the Nazi government instituted the ‘Law for the Prevention of Progeny with Hereditary Diseases.’ This law, one of the first steps taken by the Nazis toward their goal of creating an Aryan ‘master race,’ called for the sterilization of all persons who suffered from diseases considered hereditary, such as mental illness, learning disabilities, physical deformity, epilepsy, blindness, deafness, and severe alcoholism. With the law’s passage the Third Reich also stepped up its propaganda against people with disabilities, regularly labeling them ‘life unworthy of life’ or ‘useless eaters’ and highlighting their burden upon society.
“Just a few years later, the persecution of people with disabilities escalated even further. In the autumn of 1939, Adolf Hitler secretly authorized a medically administered program of “mercy death” code-named ‘Operation T4,’ in reference to the address of the program’s Berlin headquarters at Tiergartenstrasse 4. Between 1940 and 1941 approximately 70,000 Austrian and German disabled people were killed under the T4 program, most via large-scale killing operations using poison gas. (This methodology served as the precursor to the streamlined extermination methods of the ‘Final Solution.’) Although Hitler formally ordered a halt to the program in late August 1941, the killings secretly continued until the war’s end, resulting in the murder of an estimated 275,000 people with disabilities.” –United States Holocaust Memorial Museum