Let’s Talk About Disability—My Disability

If you asked me what social statuses I belong to, disabled would certainly be one of them.  However, I sometimes feel as though identifying as a disabled person is not that simple.  At first glance, you probably wouldn’t even notice that I have a disability.  From experience, I learned that hidden disabilities can be hard to prove, and identifying as disabled can be frustrating, especially if persons both inside and outside the disability community question whether you are “disabled enough.”  What is “disabled enough?’

My disability is rare in females and it’s unheard of by many.  After I was born, my parents suspected that my vision was abnormal because they noticed that I was not focusing on objects, and an appointment at the pediatric ophthalmologist’s office confirmed their suspicions.  When I was three months old, I was diagnosed with ocular albinism, an inherited condition which the eyes lack melanin pigment because the fovea never completely develops during gestation.  A tiny pit located in the macula of the retina, the fovea specializes in sharp vision.  Therefore, those with ocular albinism have a reduced visual acuity, which usually ranges from 20/60 to 20/400.  Today, my best corrected vision is 20/80.  Extreme eye fatigue, light sensitivity, a nystagmus, inability to see at a distance, and difficulty reading small print are the vision problems that I experience.  
 

Is that "disabled enough?"

Measuring Time

While many measure time by clocks, watches, or even sundials (lol), for the past three years, I have been measuring time with an hourglass that revolves around my accident--from the moment that I fell off a cliff onto my back and severed my spinal cord, never to walk again.  

The moments seem so unreal as I look back on them.  I can't believe three years have gone by already.  I remember the months in the hospital thinking that my life was over...that things would never be the same again.  I was fixated on all the physical pain and misery from that terrible moment as well as the long list of my inabilities I had mentally created.  I was torn between quitting and moving on.  It was a big decision to make, but I chose the latter:
I moved on...and it did get better. 

As I reflect upon my experience in D.C. this summer alone, I can recall many moments of learning and growth that have come as a result of the accident--wonderful experiences I never foresaw while in the hospital like this internship in D.C.  Pushing through tough storms physically and emotionally, answering a million questions in my mind and heart, discovering new relationships, managing my internship, and exploring the city have each taught me something new and exciting about myself.

For one, I have proven to myself and others that despite my tendency to get lost easily and fear of getting stuck in a stinky metro elevator,  I can be independent in a wheelchair.  Back in Utah, I had the support of my husband, family, friends, and school--my safety net that protected and made accommodations for me.  I have lived and traveled abroad in the past, but have never had to do it on my own in a wheelchair, so I felt hesitant to live on my own in a relatively big city, afraid of big falls causing breaks in my body without help, afraid that I would get too sick without anyone helping me, and even getting around and doing my own grocery shopping by myself without a car.  As I became more familiar with the streets, the metro, the people, the culture...I found that it could be done, one step at a time. 

Sometimes, things do get rough though because my independence around the district depends on universal design--reliant on civil engineering for businesses, metro stations, cement sidewalks, etc. The fact that I live in an ablelist society becomes more apparent whenever I have to navigate around ridiculously designed metro stations with elevators in inaccessible places (L'Enfant Plaza) or worst--broken ones, but I managed as best I could with that challenge.

Now, if I can do that, I can do even harder things.

As I reach another milestone in my journey, I would like to thank AAPD for the opportunity of a wonderful summer of continual learning.  All that I've learned this summer could not have been possible without their assistance and encouragement.  I now feel more confident in my abilities to navigate this world and am ready to enter the workforce as a productive citizen.  I am so grateful for the opportunity to work with such kind bosses at Disability Rights International, who really cared about my well-being and growth.  They really are some of the greatest voices of the disability rights movement today.  I am also thankful for the chance to live with and learn from my roommates, Allie and Bonnie--the voices of future disability rights leaders.  I'm thankful for the friends I've acquired this summer as well as my long-time confidants, Carlina and Jeff, and the many ways that they have enriched my summer, including exploring the city and long dinner conversations.  This has truly been a summer worth noting in my hourglass book of events--time well spent.

Thank you all for an unforgettable summer!! Now I am about to take another bold step by flying internationally on my own for the first time, to London, England. Wish me luck!

Best,

Martina

Scholars Weekend

This week I left for a four day Scholar’s Weekend at the National Conference Center in Leesburg, Virginia, which I attend annually as a Jack Kent Cooke Foundation Scholar.  Jack Kent Cooke was a Canadian-born entrepreneur who at various times owned sports teams such as the Washington Redskins, the Lakers, and the Los Angeles Kings.  A keen businessman, he led a colorful private life, but Mr. Cooke remains best known for his remarkable generosity.  Upon his death, the bulk of his estate was given to the establishment of a foundation that awards scholarships to high achieving students of modest financial means, enabling them to go to college and complete degree programs.  I belong to the eleventh cohort, as a 2011 Undergraduate Transfer Student.  Because of “Uncle Jack” as we call him, I am able to pursue my dreams of obtaining a bachelors and master’s degree in social work.  We call our fellow scholars “cousins” and we refer to ourselves as “Cookies.”

During Scholars Weekend, we attend a variety of panels and workshops.  Programming begins at eight-thirty each morning and continues to roughly nine-thirty each night.  The highlights of our big weekend in the annual talent show on our last night and the Cooke Conundrum.  The Cooke Conundrum is a problem solving puzzle race that saw us split into sixty-odd teams of six as we tried to decipher difficult clues that led to the answer.  Saturday was my first conundrum, and I thoroughly enjoyed the challenges. 

The extended weekend in Leesburg ended all too soon.  I made new friends and renewed my acquaintances with others.  It has only been twelve hours since we boarded the shuttle buses to take us home, and I am already looking forward to next year.

NYC Subway Ride

While riding the subway in NYC this weekend I had an experience that I just would not have on the Metro in D.C.  A man entered at one of the stops.  He was wearing a well worn white shirt, with stains on it, and a pair of dark blue jeans.  He entered to our right and I noticed him right away.  He was talking in a loud voice, but I could not understand what he was saying at first.  He was swaying he shoulders back and forth to some unheard music and I just figured he had schizophrenia.  He stopped in front of where my mother, sister and I were sitting.  He started yelling about how all of us on the train did not have jobs, that only he had a job, and then he went into a routine about how he ended up living on the trains, making a living.  He talked about his 398 lb wife and her horrible cooking and how she drove him out of the house and into homelessness.  He did all of this in quite an amusing manner, but most of the people on the train averted their eyes from him, staring at the floor or at their phones.  One man started yelling at him that he did not want to hear his "shit", and I was worried an altercation was going to erupt, but it simmered down and nothing physical occurred.  Just before we got to our stop he asked for some money to feed his belly and he got five or six dollars, even something from the guy who had been yelling at him.  He left us at the stop and was off to another car.

That kind of solicitation is illegal on the train, but he is low risk, as long as he does not upset someone too much, they are not going to report him, and since he has no props, he can disappear into the crowd really well.  He can make a lot more money doing that than he can begging up on the streets.  It may take more of an effort, but he may say "what do I have to lose?"

I'm curious what the mental health status of this gentleman is.  Many people who are homeless have mental disorders.  They have slipped through the cracks of a broken system.  They are the victims of an uncaring world.  These are the people I want to dedicate my life to.  I want to change the system so the cracks get filled and people no longer slip through them.  I, myself, cannot give every homeless beggar enough money to really make a difference, but I might be able to create a program, or change a policy.  This is the advocacy work I want to do.  I will advocate for people whose voices are not being heard.

Thank You

All I can say is thank you. Thank you to all of the people I have met this summer - my wonderful roommates who have provided love, support and honesty, the AAPD interns who have given me a diverse amount of perspectives, my mentor - Curtis Richards for already teaching me so much in so little time and AAPD for providing the resources and support for this unforgettable experiences.

As this summer comes to a close, I am reflecting on all that I have learned and encountered; I could not feel more grateful! From working at USAID to attending the NCIL conference to spending time with the great disability rights leaders, I am overwhelmed with the accomplishments and future of this movement.

As I begin to pack my things, fortunately, I will not be saying goodbye to this beautiful city because I will be beginning my junior year at American University. With my new home in the district, I cannot wait to continue developing my place in the disability rights and justice community.

Lead on, lead on!

Almost Gone

I couldn’t have asked for a better second-to-last week. I got to spend quality time with other interns, people from my office, and got to meet Senator Roy Blunt. In spending the evening in the company of Rak and Ben, I learned of breakfasts held by Senators in order to get to know their constituents. I went to my Senator’s website, and learned that he was having what he calls a “Missouri Morning” the next day. I went and was able to meet and take pictures with Senator Blunt. He was a very nice gentleman, and was interested in my time in Washington. Realizing that I only had a week left caused me to slow down and take everything in a bit more. I went to the Nationals game on Thursday with a couple guys from work and had a great time. It was my fourth Nationals game, and, like the other three, was awesome. The Nats went on to win, and the night was good. I also spent more time hanging out with my roommate Rak, who is a great guy. We hung out pretty much all weekend, and got to know each other even better. It’s going to be very sad to leave DC in less than a week, but I will forever cherish my time here. My final week promises to be another great one, as if I would expect any less. I will definitely be spending more time with the great people I have come to know here, and will have a heavy heart come Saturday. Signing off, Paul

Disability First

The phrase “person with a disability” seems like something that you’d find on packaging for action figures.

Which is to say that recently I verbalized a lot of things that I think about the debate regarding person-first language ("person with a disability," "person with autism") vs. identity-first language ("disabled person," "Autistic person"), and the attitudes that people often express when talking about this issue, and other disability-related discussions where those same attitudes crop up.

So basically, to me, “person with a disability” sounds like “Magneto action figure with detachable cape” – like the disability is an extra that comes with the person, but not really a part of that person. Lots of disabled folks and communities have valid reasons for wanting people to use person-first language – for example, people with intellectual disabilities often prefer to be referred to that way, and I respect that. However, when non-disabled people insist on only ever using person-first language, I often feel like it’s because they don’t want to play with the action figure until they’ve detached the disability, so to speak.

When disabled people, Autistic and non-autistic, say that they use identity-first language to refer to themselves, a common retort is “I don’t understand why you would define yourself by your disability.” To me, this doesn’t make sense. I call myself disabled because I don’t think my disability needs to be held at arm’s length, not because I believe that I’m autism on legs.

(As with my other traits, I refer to my disability with an adjective-noun construction which is common to the English language. I would also describe myself as a long-haired woman. So far no one has come forward to demand that I instead refer to myself as “an individual with long hair,” or accused me of “defining myself by my hair length.”)

I’m starting to think that when people say “defining yourself by your disability” they really mean “talking about yourself in a way that reflects the belief that your disability is not detachable.”

I was at a conference last summer at which Ari Ne’eman gave an introductory speech, and it fell to him to explain why ASAN uses identity-first language. One of the things he said, which I really liked, was “If I’m on a flight and the airline loses my luggage, I don’t arrive without my autism.” And I feel like this is actually sort of central to the difference between disabled identity-first proponents and non-disabled person-first proponents: they want the disability to be separable enough from us that we can hide it, pack it in a suitcase, and maybe, one day, be able to lose the suitcase forever with the help of a cure! Or, to use my earlier analogy, they want our disabilities to be like an action figure accessory that you can put on and take off, so that they can choose when to interact with and accommodate our disabilities.

So why do I use identity-first language to describe myself? Because I like my disability, but more importantly, because it is a part of me that can never be separated from my personhood. I don’t want to encourage anyone to think of my disability as detachable from who I am.