Wednesday, August 8, 2012

My goals (Part 2)


My Goals (Part 2)


In order for this coalition to be successful there are several goals that I have in mind. First and foremost I would like to spread awareness about the challenges disabled people face on a daily basis. This can be done though creating personal videos, blogging, hiring speakers, holding awareness events, and staying involved with the local community.  My second goal is to set up a network for peer support and advice. I think it would be extremely beneficial for Youth who have successfully overcome their disability to offer their expertise and support to others who have not yet learned to cope with their disability. My third goal is to foster personal bonds among Youth with disabilities. This would be accomplished by organizing social events such as picnics, ice-cream socials, bowling trips or even something as simple as getting a group together for pizza.  My fourth and final goal is to shape disability policy. This can be done by calling writing letters and maintaining connections with U.S. Senators, Congressmen and other policy makers, working closely with nonprofit organizations, attending congressional hearings and promoting awareness of Disability-related internship opportunities, career and professional development.

My goals (part 1)


I have almost finished with my internship experience at the American Association For People with Disabilities. At my internship I have been working on the same project so I felt it would be important to talk about what I got out of this internship oppertunity and how I plan to stay  involved with the disabilites community after. I have decided to devide this blog into three parts.
Part One
This internship has made me aware of the need for the development of a coalition for Youth with Disabilities. After doing some research and speaking with numerous people, I discovered that there is no such group within New Jersey that is open to all Youth with disabilities, in particular kids that are in middle and high school. Ultimately I hope to create such an organization on a grass roots level based out of New Jersey to provide support to Youth with Disabilities and to further educate the public about different types of disabilities.

Youth in general face some of the most difficult challenges and make some of the toughest decisions in their life. Youth with Disabilities face  the same challenges and must perform at the same level  as everyone else but are forced to overcome many additional obstacles such as bullying, depression, concentration, processing and mobility issues . A person’s Youth is the time that their character, interests and ultimately their path toward the future is set.  Providing support to a struggling child can be the difference between them graduating from high school and going on to college or simply dropping out.

Monday, August 6, 2012

D.C. in D.C.- week 10

Hello my fellow Americans, I just started my post off like this because I'm a silly person, in which I hope everyone enjoyed my humor this summer! Last week flew by so fast and this coming week marks the last days of my internship. Throughout this past week, I did a little venturing out on my own but not nearly as much as I hoped to accomplish this summer. I kept putting  off all of my museum visits by constantly telling myself "I'm going to be here for 10 weeks, I have enough time to see all the places I want to." But to my surprise, I managed to see about 3/5ths of places I wanted to see while here this summer. Although, I must admit that I did get to go to some pretty cool places (hints the 3/5ths) like the Library of Congress and The Pentagon!

Again, as I mentioned before, last week went by so fast and the only couple of things that hit the top of my chart of "cool things" was that the employees in my department ODIFP (Office of Data Integration and Food Protection) threw all of us interns a cookout which was nice because I missed so many cookouts back home.

Next would definitely be that when I visited The Pentagon and I had the opportunity to sign a book that would be given to the families of the victims of  9/11 who lost their lives at The Pentagon once it was all the way full. A sombering moment that really hit home. The tour guides, who were both members of our Armed Forces pointed out where you could see the difference in the outside layer of brick and how they tried to replicate what the not-so damaged inner layer looked like; you could still see the scorch marks from the jet fuel fire stained against the inner layer of brick which burned upward of 1,000 degrees. I remember when it happened, I was in the 6th grade in middle school. It was mainly the reason why when I turned 17, I joined the Navy, sadly enough, I didn't get to go help give the payback that the other Americans in the Armed Forces does, but nevertheless I want to come back to DC soon and fight the good fight even if it is on the civilian side of the war efforts in defending this great nation we all call home.

I want to move forward with my highlights because thinking about 9/11 makes me angry, not so much that I want to flip out but it is well said that "We Will Never Forget". Lastly, on the brighter side of my week, I did get to go see The Dark Knight Rises which really blew my socks off! One reason it did was because it costed 12 dollars to see and another reason was that it was three hours long! I won't complain though because in my opinion it was worth every cent (could have been three bucks cheaper at home) and every minute of the film. I am very anxious for that to come out on DVD, I have The Dark Knight on DVD already so this and Batman Begins will be my Trilogy Collection which is pretty neat! I have recently found out that I really love movies! It has become a hobby of mine now and I am officially announcing that I will probably go broke in the months to come just from going to midnight releases of Blockbuster films! I have come to terms with that being a new passion of mine and Lord Willing no one else will be able to smuggle shotguns and assault rifles into anymore premieres.

In closing, I can say that I was amazed that in this week I did not have any follies! Maybe that's why my week didn't seem so full and went by so fast! God is good and I am glad that AAPD, Wal-Mart and MEAF has allowed me to have the DC Experience this summer. Working full time this summer was sort of a challenge as the weeks progressed because it is the first time I have done so in three years so I would like to give myself a pat on the back. Thank goodness that I will have 17 days left when I get home before school starts! On the contrary, about 14 of those days will still consist of me running around like a chicken with my head cut off! Bills to be paid, classes to be scheduled, cars/motorcycles to be purchased and applications to be filled out; I appreciate weekends a lot more than I used to, but I prefer to be busy way more than to have idle time on my hands! Here's to being PRODUCTIVE because now 24 hours isn't enough time for me in a day!

I have much love for everyone, I enjoyed my time here this summer! This is not a goodbye but only an...

Until next time

Daily Democracy


Although it’s the last week this week, I am planning to write another blog once it’s really the end of the internship. There are so many people I want to thank, but I’m going to wait until the end of this week for that. For now, I have one more topic I wanted to talk about which is youth and disability voting.

On Saturday, my roommates and I had a wonderful dinner with my mentor, Yoshiko. I am so fortunate to have her as my mentor and to be able to learn from her great work and advocacy. She has such a passion for youth involvement in the disability rights movement. At dinner, she talked about the importance of voting.

Youth historically have a low voting turn-out and low participation in the democratic system. I know many young people who are dissatisfied with the current political system, who feel like nothing changes in government. Although change is slow and sometimes we move backwards, if we want to change our world for the better, political and social participation is vitally important. Disengagement does not foster change. Involvement and empowerment do.

In the 2008 election, 51.1% of citizens aged 18-29 voted. This is an increase from 1996 and 2000, when youth voting was at an all-time low. Yet half of all youth eligible to vote did not go to the polls in 2008. The numbers are even lower when you look at state and local elections. Polls suggest that the youth vote in the 2012 Presidential election will go down. We've got about three months to turn those numbers around. It is vitally important that we vote in elections. We're voting about our future and if we don’t participate, we’re the ones that will have to deal with the consequences the longest.

People with disabilities are also a huge voting bloc, yet we are underestimated. According to various studies, nearly 15 million Americans with Disabilities voted in the 2008 Presidential election. This was a rise in voting for the disability community, but there are 54 million Americans with disabilities. People with disabilities make up 19% of the US population, yet our voice is not as powerful as it should be, given our numbers. While there are still challenges with voting places being inaccessible, states and advocacy groups are working to make voting more accessible. We must empower our community and show that we are a force that needs to be listened to. We need to support candidates that address our interests and our issues.

From this summer, I have learned the importance of advocating for issues that matter to me. We should all educate ourselves about bills and policies that will affect us and our communities. This means contacting our Congressmen. It means caring about who is running for Governor, for State Congressmen, for City Council and Town Meeting Member. It means making calls, sending emails, advocating and lobbying.

In closing I will quote Justin Dart Jr., who wrote, "Vote as if your life depends on it. Because it does." Decisions are made by those who show up. If you don't vote, advocate, and make your voice heard, the issues you care about will not be addressed. Candidates listen to those who vote and those who speak up. We've got an important election coming up in November. Make sure you're registered and make sure your friends and family are too. For those who are working or going to school away from home, be sure to apply for your absentee ballot.

But don’t forget that spirit of empowerment once you fill out your ballot. Democracy doesn’t come around every four years. It can and should be a part of our lives every day.

Sources used for this article:


Something to Point To
Angela Denise Davis

I first encountered a recording of the Broadway musical, Working, when I was an early teen whose only desire was to be cloistered in my local, public library. Working was an adaptation of Studs Terkel’s book by the same name, and was a musical exploration of how some Americans viewed their jobs. I have never forgotten some of these songs, and recently added the digital recording to my iTunes library. The songs included stories of a young boy who had a newspaper route, a woman who cleaned office buildings at night, and a housewife who managed her home. I have been thinking a lot about Terkel’s book and how it would be different if it were based on the working lives of persons with disabilities.

The unemployment rate for persons with disabilities is over 70 %. Work is such an essential aspect of human life. For those individuals who do work, it may be easy to take for granted the feeling of putting in a long day of work, or the feeling of, as they sing in the musical,  “having something to point to.”

Last week, the interns attended a reception given by Wal-Mart. An employee from the company asked us to talk about one highlight we experienced this summer. I thought about it for a minute. The summer has had many highlights. It has been a great pleasure to work with Ginny Thornburgh on the “Statement of Solidarity.” I have enjoyed meeting various business people and government officials. I have enjoyed being able to make some opportunities for myself such as attending a conference on theology and disability in Chicago, and spending a couple of days at the 2012 International AIDS Society Conference. There were so many other bright lights during the past ten weeks, but I hope to never forget one moment I experience during my internship.

During one sweltering, triple digit degree evening. I left the office, and started my way back to the dorms. I was heading west, and it was impossible to hide from the sunlight. In a circus of pedestrians and cars, I navigated my way through the rush hour traffic. At the corner of H Street and 21st Avenue I was struck with a visceral acknowledgement. I had not felt this way in years. It was not the heat, or the membrane of sweat that covered my body. It was the recognition that I had completed a hard day of work at the office. I had brainstormed with colleagues, investigated problems, and created solutions. I had “something to point to” for my day. I had not felt like this since I resigned from my work at Vanderbilt University.

As I leave D.C. this week, I take that feeling with me as I create my own work in consulting, vocational rehabilitation, and theological education around issues of disability. We all should have “something to point to.” We all can make a contribution. We all have gifts.

It’s about time to head out for work, but there is just enough time for one more song. I wish you were here to listen with me.

“Everyone should have something to point to
Something to be proud of…
Everyone should have something to point to…”

The end to a beginning...


It has been nine weeks and four days since I landed here in D.C. and this upcoming week marks our tenth and final week as interns. Looking back I’ve experienced both positive and negative experiences, but if I had to do it again, I would. Whether I go into a disability related field or not, I am still walking away with a better understanding of my own needs as a person with a disability. Prior to this internship, I used to be wary about requesting an interpreter for any event outside of school and simply accepted lack of accessibility for the DHH in movie theaters and concerts as “just how it is”.  I used to consider myself a self-advocate, but being an intern here has really made me open my eyes to the world of accessibility and possibilities. Being here has helped me become a better advocate. Just this past weekend I experienced my first captioned movie in theaters. It was an amazing experience knowing that I wouldn’t have to wait for a movie to come out on DVD in order to watch it with subtitles. Afterwards, I did some research on my home state and was disappointed to learn that the closest theaters with captioning are either in Minnesota or Illinois. Even a friend back home, who works at a movie theater, was surprised to learn of the lack of accessibility for DHH individuals in theaters. With the digital projectors used today, it shouldn’t be hard to accommodate DHH individuals, especially when there is technology available that would allow DHH individuals to watch the same movie with their hearing companions via infrared captioning glasses. Whether I end up pursuing a career in mental health or economics, I hope to be able to apply what I’ve learned from this internship about myself and others with disabilities, whichever direction I choose in life.

This summer...


So, as I began to think about what I should write this week I thought to myself: where did this summer go? I mean really, I can’t believe it is week ten already. I decided to spend this post trying to figure out what happened to this summer. Have you ever used that “Year in Statuses” program on Facebook? Well, if you have, know this blog is going to read a lot like one of the collages that could be generated by that program. So, this is what happened this summer:

I traveled for the first time across state lines in my wheelchair (using Amtrak); Met my roommates; we became live advertisements for Target the first couple of days we were here; Jess and I learned how to fit in the Metro elevators together; a metro door closed on my wheelchair (six people rescued me); Orientation week; Joyce Bender dubbed me a trouble-maker; crash course in disability history; went to church; Visited with my grandma days before she died; met my aunt London for the first time; intern Bible Study; Dan walked me to the Metro station; struggled, NICL women’s forum;  Security clearance; received my badge (and felt special); Created a presentation for managers and employees on the reasonable accommodation process, CRPD hearing; CRPD mark-up; went to small group with my mentor; learned of the greatness of frozyo (it’s Kosher!); went to the Air Force memorial with a friend from home; went to the AIR orientation; resume workshop; Schedule A; watched fireworks from my roommates window; medical issues, rode a handcycle in Maryland; JFA Awards (I am CP!); Disability Pride Parade in Philly; 30th Street Station with Yoshiko; planned women’s forum for DHS; Sunday evening reflections; read books; met awesome people; Roti (“see you later” dinner); tested people’s patience; swallowed my pride; learned about mobility assistance dogs; great conversations with my roommates; FDR Memorial; laughing purely from exhaustion; cleaned; ordering groceries; Starbucks meetings; lunch with friends; MLK Memorial; ACMS data entry; Wal-Mart cupcake party; Lebanese Tavernea; prayed elevators would keep working; wrote a business case and learned a lot.

There is much more I am sure but I have already gone over my word limit. I just have to say that I am so thankful for this opportunity and experience. It has been a sweet gift. Thank you AAPD for making all of this possible for me!  

Today reminded me of a kind of silly event.

I remember a party in elementary school, It was a graduation party and I know that doesn’t sound like very much, but at the time it was a very big deal. All the popular kids were going and I was invited. I was so flattered and excited to be invited, but nervous too. It was supposed to be kept under wraps, as not all the class would be attending, but in an elementary school it didn’t take very long before word was out.

Because I hung out with so many groups of people, I got to console those who weren’t invited and quietly celebrate with those who were. However, something didn’t feel right,  I was the kid who would pretend to lose or to be bad at something in order to allow others to win or feel that they’re the best at something. I also, knew how it felt to be excluded and not only that, but shamed.

I remember giving my invitation back. I told her I couldn’t come. I remember the shock on her face. as I walked away she shouted, your a loser! I remember what she said, because it was the 1st time in that whole situation that I felt certain I did something right.

I never told anyone this. I couldn’t admit to my friends that I was invited and they were not. I was embarrassed that it took me so long to give back the invitation. So I convinced my parents to help organize a pool party for everyone in the class on the same day. Access to the pool was free, so all students could attend. I pretended not to know that the party was on the same day and the girl pretended she never told me, because she was so embarrassed by the fact that I gave her back her invitation.

 I was at the time whatever I needed to be for someone else. I’ve always identified with the underdog, but it’s exhausting and it doesn’t come with a lot of recognition. It was clear to me as a child that a life not lived by one’s morals is a life not worth living. I will fight like hell at the expense of myself, but it’s taken me a long time to realize that this quality is rare. I am always disappointed when others will not do the same for me. So over the years I have tried to be more responsible to myself. To do what I want them to get what I want. But, I think I’ll always be an advocate and always identify with the underdog and always stand up when I feel things are unjust. I don’t think you can call yourself an advocate when you only advocate when it’s convenient for you or when it’s someone else who is sacrificing something. I am what the movement needs me to be. I am what I need me to be.

And I do it for very selfish reasons, for the feeling I get when someone shouts, “your a loser!” and I think about how terrible it must feel to be called “a winner” if it implies that someone else is the “loser”.

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

Sunday, August 5, 2012

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.

The End..and Next Step


Its almost over.  I am about to enter the last week of my internship.  I am sorry that things are over so soon.  With all of the security issues, I feel like my assignments have come and gone way too quickly.  Still, I had an amazing experience at both the AAPD and the Chief Human Capitol Officer’s Office of DHS.  I had great bosses, relaxing yet busy working environments, where there was a lot to do but no one snapped or lashed out due to deadlines.  It all makes me wish I had more time.

I also met a lot of very interesting people.  My roommates, the people I did the internship with, the people in my DHS and the AAPD offices, and the people the AAPD brought in to help us.  It has all been fascinating.  I am grateful for all the people I got to know here.

As stated in previous blogs, I also have gotten a surer footing from this experience.  I have developed greater self-confidence and pride in who I am and what I have.  I am also feeling much more strongly that I want to go in social justice work of some kind, though what is still anyone’s guess. 

Beyond there, there is an element of concern.  I am honestly a little scared.  Will I get a job?  Did I do everything I could at the internship?  Was there one more thing I could have done? I feel like I did a good job, but I am still nervous.  I am eager to see what comes next, and to know what it will feel like in September when I don’t have classes to go back to.

Well, that’s the end.  Thank you to everyone who made this possible.  I had a wonderful summer, and I will be forever grateful for the opportunity I had.

FINAL BLOG

Well its the start of the last week of the internship. I am really going to miss my new friends and the dorm life.  I had a good week last week. I helped out alot at the libaery doing all kinds of work with the tapes and started on the fliing for my supervisor Venitia while she was out. Also this I had a fun weekend this weekend. I went swimming at my friends lake out on Saturday and went to see some Chineese Ackerbates on Sunday. I am also getting started on taking my stuff out of the dorms. Well this is it no more blog after this. It has been a great summer meeting you all and getting to live in the dorms again. It reminds me of Mason all over again only it is just for the summer.  Have a great year at school all and have a great trip back home...................

Disability Rights Movement in Africa!

This week in the office, we had an exciting group of visitors from Ethiopia with us. The delegation were founders of a non-profit to aid individuals with disabilities, as will as wounded veterans--much like the organizations we have here in the States. The US State Dept had sponsored their visit in an effort to assist the non-profit in working with the Ethiopian government, which apparently is a little wary of non--profit organizations.

A month or so ago at the USICD Annual Conference (which I was lucky enough to attend, thanks to my lovely Mentor), there was a delegate from Uganda present. I was pleasantly surprised to learn that there is a very strong disability rights movement in that part of Africa. There are even designated positions in the Ugandan parliament for legislators with disabilities to ensure that those specific issues are fairly represented.  I am extremely interested in African human rights movements, and I hope to focus on writing about humanitarian efforts in Africa at some point in my career.

If you'd like, check out the new edition of Life in Action at unitedspinal.org under "Publications." It's a very interesting issue that is focused on leading disability advocates and important issues that are being addressed by our community this year. These issues include the fight for accessible gas station pumps (which is a huge barrier to independent driving--bigger than actually getting the accessible car!) and the CRPD. Best of all, Life in Action is free to view in its entirety online :)

Happy weekend--Liz H.

Breakfast of Champions(Senator Durbin)

Breakfast with Senator Durbin Wow what can I say about this event? A few days before the meeting I received a phone call from my buddy Ben asking me to come with him to have breakfast with Durbin. As you can tell by now I have a lot of thoughts that pop into my head(some folks call them voices). The first thought was “Ben must really be enthuastic to see the Senator, it will be great to have breakfast with Senator Durbin’s Statue, I never had lunch with a Statue before”, however all of a sudden my thoughts became coherent and I exclaimed to myself “looks like I am having Breakfast with Durbin, we can leave the statue at home!. As Ben mentioned in his blog, we arrived to the Russell Senate Buliding around 8:06 where we were met by one of Senator’s Durbin staffers who was absolutely wonderful, the young lady showed us exactly how to enter the Russell bdg and escorted us to the room. As we walked around the room helping ourselves to donuts and coffee we were amazed at the room size. We learned that this room was the same place where John F. Kennedy announced that he would be running for President. As we were getting seated, we saw a tall man walk into the room giving a hug to one of the staff members in attendance. As I watched this blood was flowing down my spine, excitement filled my body and my whole body began to wake up(it was 8:30). “He is walking, he is talking and he just said good morning to the both of us, it is not a statue after all, that is SENATOR DURBIN our beloved representative from Illinois and the Majority Whip leader…. Thankfully he was not carrying a whip! Senator Durbin told us what is on the Senate’s agenda for today and took our questions. Afterwards me and Ben had our pictures taken with the Senator, when it was my turn to get the picture taken, I had an amazing conversation with the Senator, thanked him for supporting the CRPD and also explained a little bit about NDRN. One of the highlights of the conversation was when Senator Durbin told me “if you want to give a speech, you must run for the Senate. One of the most humble individuals I have met in my life and just a class act. Senator Durbin is just simply amazing. There is a reason that he has never lost an election, the man truly cares about the people of Illnois. Ben told me later that Senator Durbin asked him if he were a “packer fan”. As far as I am concerned Ben can afford to be a Packers fan, he is an amazing person as well. See folks something good does come out of Wisconsin!(just teasing) NDRN and the Disability Rights movement Secondly, I want to address another topic or issue. Folks always send me messages on Facebook or through other electronic outlets(email) asking if my "strength based approach" to Counseling is gone now that I am in Washington... my response to these individuals is absolutely not. If anything I was more exposed to the Disability community during my time in Washington and I saw highly qualified persons with disabilities' potential being undermined, I feel everyone should be treated as equal. The Rehabilitation Counselor who got to his or her level of position should not tell a client who has the desire to pursue a career goal "no". In the previous Rehabilitation agency I was at, one of the staff member asked me why I was telling a client who had been working for 22 years as a custodian that he could be a supervisor of the Janitorial crew(something he desired to be). My response was simply "Based on his experience and skill set he can probrobly scrub the floor better than the Rehabilitation Counselor who assigned him the task".... They did not like that very much. As a graduate student pursuing a degree in Rehabilitation Counseling I incoporated a strength based approach to my counseling sessions with the main philosphy of my approach being to recognize the client's strengths instead of focusing on his/her limitations. I feel that many times society tends to display an "inferiority complex" towards individuals with disabilities. From Accessibility to Education all the way down to Health Care. Persons with Disabilities are constantly being told what to do and how to behave. These individuals are often less likely to obtain jobs in the field of their choice "because their disability is much too severe for them to work". The other day I was in the elevator with an individual who was very pleasant, appeared to be outgoing and very talkative. As we went up to the 6th floor(yes elevators are like happy hours, a wonderful way to mingle with others), the young man mentioned to me that he had a mental illness and that the Vocational Rehabilitation counselor did not open his case because she felt "he was not ready to work due to his condition". A Vocational Rehabilitation Counselor making statements like this can be compared to a doctor not wanting to operate on an individual with leg amputations because "his condition is too severe". In the VR counselor case I am quite confident that there is something wrong with this VRCs medulla ombagata(just kidding). It is these cases that demand the attention of public policy specualists across the various grassroots organizations such as: our very own AAPD, United Spinal Roll and..... NDRN! Oh one thing that I want to mention is that I have learned the ways of Washington, so I refuse to use anything, but acronyms! When I was asked to become an NDRN intern for the Summer, at first I thought to myself "What the heck is NDRN?". Once I looked up the organization and discovered that it was working in Public Policy, I realized that I would be surrounded by 5 lawyers in the Public Policy department and 3 law interns. There were two thoughts that popped into my mind at the time. The first was "The only thing I know about law is that "if the glove does not fit, you must acquit". In addition the only two compelling words I can say to an audience is "give this guy a job". Needless to say despite my lack of experience the National Disability Rights Network(NDRN) was willing to take me on as an intern. Prior to coming to NDRN, I knew about Disability rights as a person with a disability, however I had no idea how much the disability community is affected by the injustice that occurs in society. Many of you know my own personal struggles as a person with disability, however I would like to recap on two of the biggest issues in Washington right now. Seculsion and Restraint: Many of you know about seculsion and restraint as being a hallmark issues. NDRN was the first not for profit agency to publish a report on this topic, within 6 months it recieved the attention of Senator Harkin's Health, pensions and labor committee(HELP) and the hearing was scheduled for July 11th. Those who are not familar with the seculsion and restraint issue are encouraged to visit http://www.pbis.org/seclusion/restraint/default.aspx. Currently all 50 states have a reported case. Ashley treatment- This issue is not very publicized, however it should be as it is a very unethical procedure taking place in our local hospitals. The Ashley treatment was named after a 1 month old infant by the name of Ashley who underwent surgery to remove her external reproductive organs. The rationale the doctors provided for undergoing this treatment was that if the infant does not recieve this treatment she will grow expotentionally and the parents will be unable to take care of her. It was the parent's desicion to remove her reproductive and other external organs because they wanted to keep her a "small and childlike", the parents referred to her as a "pillow case baby". As the reader can see, although this issue is a bit more complex than the other ones, the doctors and parents violated the child's dignity, self worth and right to grow and develop into a productive member of society. Ashley would pass away just hours after the surgery. We will never be able to see Ashley grow into a productive member of society or reach her god given potential. All thanks to this invasive medical procedure. This specific treatment is not only revelant for Ashley, but many children with disabilities. There are countless examples of a child being denied his/her human dignity by those whose are sopposed to care for them, this is not right. America is a beautiful country, however we must expand the definition of "equality" to individuals with a disability. As parents we need to be supportive of our children no matter what despite their physical limitations. I grew up in a very loving family and I strongly believe one indicator of a child's success is how strong the support system is. I am sure that Ashley's parents had good intentions, however taking the easy way out is never an option when a child's dignity is in question. Those of you who are interested in hearing more of the Ashlry treatment are encouraged to visit http://www.napas.org/en/component/content/article/24-hompagestories/258-study-finds-medical-procedures-violating-the-civil-rights-of-people-with-disabilities.html Everything I mentioned in this blog sums up why this internship has been the best experience ever. "At the end of the day it is not about our own egos, accomplishments or the praise others give us, it is about making a difference in the lives of persons with disabilities". Senator Durbin and NDRN are two examples of those who make a difference in the lives of persons with disabilities. It was a honor to get a chance to be involved with both parties even if it was only briefly. Until next time Rak

Saturday, August 4, 2012

Week 10

It was another productive week in DC! This summer has gone by so fast and it is now coming to an end. I find myself wishing we had another month or so in order to continue making connections with people in the area. I feel that I have met so many great people this summer. The networking portion of this program has truly been invaluable.

The highlight of the week for me was going to meet Senator Durbin (D-IL) with my buddy Rak. We were also supposed to meet Senator Kirk (R-IL), as the two Senators generally host the constituent coffee/meet and greet sessions together. However, Senator Kirk is still in Illinois recovering from a stroke. Nevertheless, Rak and I both got our pictures taken with Senator Durbin and had time to talk at length with one of his staffers and an intern (who were honestly two of the greatest people I've met this entire summer)!

It was very interesting to hear Senator Durbin speak at length about certain issues raised by the audience. People did not hold back with the difficult questions; the questions ranged from his stance on abortion to personal stories about access to health care. I was pleasantly surprised by how much my opinion actually aligned with Senator Durbin's opinion on a number of different fronts. Senator Durbin is truly someone who can relate to the people. He explained accounts of trying to support his wife and child when working his way through law school and some of the common struggles he has also faced in life. I came away with a newfound appreciation for the hard work our Senator has done for the state of Illinois. I actually left that morning feeling that working on the Hill could possibly be in my future.

The AAPD program has opened my eyes to the endless possibilities in the greater DC area. I look forward to finding a job in the area and continuing to grow as a person and professional. Thank you for this great experience AAPD!  

Blog 10


Note to reader: I have not spell checked this document so that you can see my dyelxic spelling

What a fabulous summer it has been. I can’t beleave how fast it has gone by and how much I have done at my internship. My supervisior had me put to gether a list of the projects I have accomplished this summer—wow, I have done a lot! I think the last couple weeks have been the best of the summer. All the pieaces have come together and I am really feeling at home at the office as well as making use of some of the connections I fourged earler in the summer. It makes me think that coming back next summer would be a highly productive use of my time—allowing me to really make the most of what I have done this year.

I would also like to take this time to think AAPD for putting together a strong program and allowing us all to have this wonderful opertunity. It has been an exsperence that has trully shaped my furture. My perceptions of public policy have sifted and I have gained a much greater respect for the federal government. I am aware of so many more recources and connections then I was when I arrived here in DC. I feel much more ready to take the plunge into employment, even though I still have a couple years before I will need to do so. Yet I know that I am on the cusp of a major shift. I am ready to begin. It is the end of the beginning!   

Thursday, August 2, 2012

Who do we advocate for?

I can't believe her time is almost done in DC. As I look back on the summer and meditate on the purpose of being here through AAPD I often find myself thinking about those with disabilities currently living in the DC area without support.

Yesterday I was on the bus and a lady sat in front of me. She was deaf and homeless. As people got on the bus I observed how they treated her and was very appalled. Many would yell at her thinking that speaking louder would help her understand them while others ignored hers and she did not exist. She was asking people for money as they walked by, but those who knew she would deaf pretended they didn't understand what her signals meant. I became outraged at the thought that we are in our nations capital and people are without the basic needs and necessities to live a fully successful life.

A large portion of the homeless community are those with disabilities. How are we reaching them? Howe reaching the "Resourceless" portion of our community? Allowing the homeless with disabilities to continue living without the basic resources not only increases the stereotypes spread throughout society but it is very bad reflection upon the compassion of our community within itself. How can we call ourselves advocates for those with disabilities when the majority of our constituency is homeless and without the very basic needs to be successful?

Give me you thoughts and share your ideas.

Best,
Shawn

Wednesday, August 1, 2012

AAPD's ADA Anniversary Celebration



AAPD's ADA Anniversary Celebration

AAPD's ADA Anniversary Celebration

Martina and Tiffany at the AAPD's ADA Anniversary Celebration

AAPD's ADA Anniversary Celebration

AAPD's ADA Anniversary Celebration

AAPD's ADA Anniversary Celebration

Jess at AAPD's ADA Anniversary Celebration

Shawn at AAPD's ADA Anniversary Celebration

Zoe at AAPD's ADA Anniversary Celebration

Zoe at AAPD's ADA Anniversary Celebration

Sarah at AAPD's ADA Anniversary Celebration

AAPD's ADA Anniversary Celebration

AAPD's ADA Anniversary Celebration

Tuesday, July 31, 2012

The ABCs of this Week

Aurora
Blogging
Capacity
Discrimination
Eastern Market
Funeral
GWU
Heat-index
Inconsistency
Justice
Knowledge
Listening
Moldy Dorm
Nepotism
Olympics
Pool lifts
Questions
Remember
Self preservation
Trap
Unholy
Veterans
Wax-on-wax-off
Xpulsion
Yenta
Zzzz

Monday, July 30, 2012

Bad Weekend

Hey all. I hope you have had a better weekend than I had, I spent mine curled up in bed sick. I’m feeling a little better today, but still far from good. As for last week, I got to experience something new: a fundraiser. I got to attend one of my congressman’s fundraisers held here in DC, and it was awesome. I got to meet several congressmen and make some great connections. I’m back at work today, although not feeling well at all. Hopefully things get better as the day goes on, but I didn’t want to lose out on a day of work since I only have ten remaining. We are still working on compiling data from our constituent surveys, and have one county left. Unfortunately, this is the largest sample size we’ll have, at over 900 entries for each of the 15 questions. This entry is a bit short, but there’s not much I can talk about except for my bad weekend, and nobody wants to hear those details. Take it easy, and I’ll talk to y’all again next week. Paul

D.C. NOT in D.C. week 9

My title brings it to the attention for all of you who did not notice that I am not in DC right now! But no worries I will be back early tomorrow morning. I was fortunate enough to be able to come home to Canton, Ohio for one of my first cousin's wedding. I really enjoyed myself and it was a well needed dose of medicine for my homesickness that I have been having.

Although I went home early Friday morning, the majority of the week I did spend in DC and it was pretty hectic. I spent a good 48 hours trying to get prepared for the JFA Awards ceremony we attended Thursday and I am glad I was chosen to speak on behalf of us all. This actually opened up another networking door for me, seeing that I received many accolades for my short description of my experience here. I received a free, autographed version of a book and exchanged some contact information with some people who are within the Department of Homeland Security!


When I return, I have some lunch dates to attend and a little more work to do at the USDA. God is good all the time and all the time God is good! I'm in for a long flight tonight so I will you all tomorrow!

Until next time!

A big decision

This week I had a decision to make.  I was at home in Iowa.  Where everything was familiar and comfortable.  I had the support of my husband and my mother and I did not have the stress of my internship that has made me question a lot of things about myself and my capabilities.  I was home because of my eye, and that was scary, needless to say.  It is still scary.  We do not have a definitive answer for what happened to my eyesight.  I just woke up one day and my right eye was blurry and it stayed that way for a week.  Thankfully, now I have my eyesight back and I learned that I am a bit nearsighted, so I got some glasses for that.  We still do not know the cause.  As stated in a previous blog, it could be Multiple Sclerosis, or it could have been a virus.  We'll hope for a virus.  Anyway, back to the decision.  I was home.  I was getting to spend time with my family.  I got to substitute teach at my mother's preschool where I work during the school year.  I love those kids and feel so at home in that school.  My mother told me that she needs a teacher for the first two weeks in August and she really wanted it to be me and since I was already home, why didn't I just stay.  My husband was missing me.  I had left the day after our wedding and we have not had any time together since.  He really wanted me to stay.  I was getting it from both of them.

But then there was the commitment that I had made.  I had responsibilities in D.C.  I had signed on for an internship that lasted through the 10th of August and I needed to stand behind my commitments.  Isn't that the professional thing to do.

Things have not been easy at my internship.  I am not saying that I wish I had not come, because that is not true, but it has been a challenging summer.  I know that the feedback that I was getting was to make me a better professional and to improve my career, therefore, I am not going to shrug it all off as unnecessary and superfluous.  I have taken in a lot of what has been said to me and I have learned a great deal.

In the end, I said goodbye to my husband and my mother and boarded, first a bus and then a train for my 30 hour trip back to D.C.  I was tired and sore when I got here, but I knew I made the right decision.  Two more weeks.
Disability and HIV
Angela Denise Davis

The AAPD 2012 Justice for All Awards and ADA Anniversary Celebration last week marked the climax of our summer internship program.  We have two more weeks to go, but it was clear that this event where disability advocates were honored was the last, formal hoo-rah for the interns.

The week was filled with other activities. I started it by having dinner with my partner who was here for the 2012 International AIDS Society Conference. Although I was not a registered participant of the gathering, I camped out 2 days at the “Disability Networking Zone” of the Global Village. It was amazing to see the international efforts of combining accessibility with HIV prevention programs. This was especially true of the presentation given by the Christian Blind Ministries (CBM) partners in Tanzania. They reported that the number of persons with HIV is higher for persons with disability than it is for the general population. A presenter also remarked that this disparity is even greater in other African countries.

The conference was attended by thousands of persons from all across the globe, and I felt that as I marched with the woman’s collective on Tuesday afternoon. I tied to my white cane the blue cloths   given to the marchers as a representation of a “sea of woman.” I lifted my cane high, and as we marched I saw another cane in the crowd. It belonged to a French woman who was quite glad to discover that she had a disabled sister in the crowd. She was not extremely fluent in English, and I did not know any French. Our language discrepancy was not a hindrance to our shared enthusiasm and solidarity, though.

The AIDS conference also offered me an opportunity to interact with friends from Atlanta and the D.C. area who are working in HIV prevention or research. A small group of us went to the Kennedy Center for an ADA anniversary performance “Theater Breaking Through Barriers” on the Millennium Stage. It was six plays about disability in 70 minutes. It was a pleasure to attend with friends, and then to talk about the performances over dinner.


Summer's Past


Since the beginning of the internship, I had been planning for this week. Sending out invitations, looking up contact information, hiring interpreters and a recorder, ordering food, buying supplies, creating materials, etc. What was this important event, you ask? On Tuesday we hosted a roundtable discussion on healthcare transition for youth with disabilities and chronic conditions at the Youth Transition Center. With 32 participants, the event proved to be a stimulating discussion and all our hard work appeared to pay off. Now that this event is over however, I really feel as if my internship is quickly coming to an end. Between having to say goodbye to a fellow intern two weeks earlier than expected and visiting with my Mom and Aunt this weekend, I feel as if my internship is over already even though I know I have 12 days left in D.C. In the time I have left, I am going to make a point to see as much of the city as possible. Even though I've been here for two months, I still feel as if I haven't seen most of the city. There is always something else to see or do. With one more weekend left, I plan to make the most of my time and visit museums and chic neighborhoods that I have yet to see. Whether I will be able to fit everything in, however, is another story.