Monday, July 30, 2012

Disability is Diversity

This week, I was invited by my mentor, Sofija  to attend a meeting at the Dept. of State regarding disabilities and HIV in conjunction with the HIV conference held in Washington D.C. this week (btw, this is the first time the conference has ever been held in the states and for a long time, foreign people with HIV were automatically denied entrance...epic moment in history).  There were representatives from various African organizations who spoke about the challenges of those with disabilities in receiving health services.  Those with disabilities around the world are highly stigmatized--second class citizens--and those who have disabilities and HIV infected are even more looked down upon.  They are the last to receive help, if any.

It also doesn't help that there is a virgin myth that if you are infected with HIV, you can rid of it by sleeping with a virgin.  Those with disabilities are generally perceived to be unwanted caste from society, therefore, virgins.  They are easily targeted and not only become infected, but don't receive treatment and have to suffer.  It's terrible that people have to endure this injustice, especially because it is NOT their fault!  These organizations are striving to change this as best as they can, but with little support.  Many of the representatives mentioned the CRPD and how it's ratification by the U.S. will become a model for improvement in their countries as well (I really hope this is the case), and I'm thrilled the convention was sent to the floor this week.  I'm so excited and am hopeful of what happens this following week.

Another topic discussed is the call for youth leaders with disabilities to rise up and become the voices of their disability communities, to educate others and push for those basic human rights--health and equality.  People should never be discriminated against because of their disability (or anything for that matter), but unfortunately, we are.  We, as disability advocates, need to work alongside able-bodies to integrate people with disabilities into society, and teach people to become not only tolerant, but accepting of others different from them.  At least, we can educate others on our disabilities so they can better understand our needs, our abilities, and how we can contribute to our society.  Disabilities add diversity to every society and make up part of the definition of melting pot.  In actuality, everyone has a disability of some sort or will experience it at some point.  We are here and proud of our disabilities, and we should never allow these challenges to hinder us from attaining our right to equal treatment, health care, and opportunities.

Sunday, July 22, 2012

Reporting an Awesome Week

I have had another wonderful week in D.C.-- simple and sweet, just as summer should be.  On Monday, I went to the Screen on the Green at the National Mall with some friends and watched the classic movie, "Butch Cassidy and the Sundance Kid" (filmed in Utah).  It was awesome!  It was so nice to lay a blanket down on the grass and watch a movie on the big screen outside in the open space.  The movie was very enjoyable with great one liners, plot, and who could ever resist Butch?  Best of all, we could see the Capitol in the background. 

On Thursday, I attended a brown bag lunch held by the Leadership Conference on Civil and Human Rights and learned useful information regarding the various capacities those on the panel have served-- at political campaigns, human rights non-profit, federal agency, think tank, etc.  They said a lot of the work they are doing could have been done withouta law degree, and that there is value in seeking as much experience as possible in areas of interests.  Many of their necessary and useful skills were acquired through internships, which makes me happy because I can check that off on the list of to-do's.  I've been debating whether or not to go the law school route or seek for a joint degree--MPH and JD, so attending this panel has given me great insight.  I was also told to take risks, but I struggle with which should I choose to take as there are so many great options.  Thus, the exploration continues...

I also attended a meeting at the American Institute of Research, which is an organization that is contracted to conduct research on various topics such as health, education, international development, etc. and improve them.  I was warmly welcomed as an AAPD intern and met such personable staff members.  I became very impressed by the projects that were described and hope to learn more about them.

Work at Disability Rights International continues as there is always so much work for the organization to do at home and abroad.  I'm gaining more and more respect for those of the non-profit sector because of the persistence and diligence required for success and action.  There's so much to do to preserve the basic rights of people, but so little resources.  I'm glad I can be a part of the work.  I am currently working with my boss on researching information and references on children with disabilities living in institutions abroad to be published in the UNICEF year end report.  How exciting!

I love having the GW pool at my disposal because swimming has been super fun and therapeutic after work.  I'm truly enjoying a healthier summer workout than any other along with wheeling to and from DuPont Circle everyday.  This is great physical preparation for my trek around Europe this coming fall.  The highlight of this week is learning how to get in and out of the pool all by myself!

Finally, I met up with some friends to watch the opening of "The Dark Knight Rises."  It was so AWESOME!! I loved the story and how it tied in so well with previous films, although it could easily be a stand-alone film.  Christopher Nolan did a great job in ending the series, and I'm SO sad it's the end!  I love Christian Bale as Batman (since high school) and I'm going to miss him!! This film is a definite must-see.

Sunday, July 15, 2012

On our way to making history

On Thursday, I had the privilege of attending the hearing on the Convention on the Rights of Persons with Disabilities.  I just have to say, "Wow!" What an incredible experience.  I listened in on the arguments for and against the convention, and both sides had legitimate points.  The chairman on the convention was Senator John Kerry (D-Massachusetts), who was very hilarious and charismatic.  A quoted I liked from him was, "Not everything that is faced can be changed but nothing can be changed unless it is faced," meaning we as a disability community need do all that is within our power to voice our concerns and push for change.  Others who are not in the same position don't understand the challenges we go through, but we can help them to understand a little more.  There is great power in numbers, so we need to mobilize our communities in capitals of the 50 states to exercise our democracy and fight for this convention! Here are some of the senators present: Senators McCain (R-AZ), Durbin (D-IL), Moran (R-KS), Harkin (D-IA), Barrasso (R-WY), Coons (D-DE), and Udall (D-NM), Lee (R-UT).

Senator McCain

Liz, Dwight, Me, Rhonda, Dana, Yoshiko, and Allie

As DeMint, who was obviously against the convention was leaving, Senator Kerry said, "Oh you're leaving...I was about to welcome you to the supporters group." I couldn't believe how hilarious and real he was in that room.  I always thought he was tons more serious.  Who knew?!?

There were so many supporters for the convention within the Senate that I am optimistic it will be floored next week (I really, really hope so).  I can't emphasize how important this convention is for our disabled citizens abroad--military personnel, students, tourists, workers, govt. officials, ex-pats, etc. in order to have accessibility wherever they go.  This document is centered on the equal rights that every disabled person deserves in their communities--quite important.  Although this convention is nonbinding and countries are not obliged to follow, it does begin talks on a very important issue that affects millions of lives (everyone reaches a point of disability in their lives) and allows the U.S. more say in this matter at the table.  Countries who have ratified it are required to send a follow-up report every two years.   It sounds like a pretty good start to me.  To read more about the convention, Click Here.

Tuesday, July 10, 2012

Getting around New York City in a Wheelchair

New York City, one of the most dazzling cities in my book. The first I ever visited was when I was a young sixteen year old. The lights, the shops, the excitement of massive crowds, the accents and cultures...they all intrigue me, especially the shows on Broadway. What a huge melting pot! Everywhere I went, there were people speaking all sorts of languages. I get excited every time I heard Portuguese and Italian being spoken...such beautiful languages! I feel my love along with my appreciation for the city has only grown since learning more about the history and gaining more cultural perspective over time. This time, I got to visit the city with my sister, who is living there for the summer, which made it extra special and even more of an adventure.

We went up to the 86th floor of the Empire State Building, the tallest building in the city (tickets were $25 each).  We saw the whole city and its lights for far above the ground.  I loved the feeling of a little bit of invincibility from being so high up.  I loved the time to think outside about some very important questions that have been on my mind for a while in a "serene" setting, with little sirens and music to break my concentration.  I loved the sense of security from being there with my sister--one of my bestest friends in the whole world. It seems New York has a lack of signs because it was difficult to navigate and locate elevators to get to the top of the building. And there were no accessible women's restrooms on the 86th floor. Blah! I wished all of the attendants were all on the same page and communicated instructions better. That was the most frustrating thing. 

We visited the World Trade Center (free, but prior registration required) with mates from her program (brilliant and funny people). We went through a long security check line, but made it. The memorial included two reflection pools, each with names of heroes from 9/11 engraved on them.  The water dropped into a never ending pool, which to me, was symbolic of forever--the memories of those who passed on will forever remain in our hearts and minds.  I thought long and hard about life and sacrifice for the greater good. They are true heroes. I'm so sad that this happened, but so glad and proud of those who, in the last moments of their lives, decided to prove humanity is existent and saved others. Words cannot describe the love and respect I have for their courage and valor.  It's such a  wonderful opportunity to be there and to reflect on their lives and sacrifice.  I'm thankful for the memorial because it helps us to forever remember and cherish their lives. It was a bit difficult for me to get around the museum as the lift was broken and some of the displays were on platforms that were crowded with people. Maybe next time will be better. Is there an off season?

We also watched the show, "Chicago" on Broadway.  What a scandalous and hilarious show! I was afraid I would leave feeling depressed or sad that it would totally bring out all the scandal in people, but it's the crazy reality some people lead. I could probably deal without all the lies and scandals in my own life though. I was glad there was wheelchair accessibility at the theater, although less smooth than other places because it was an afterthought. Pretty old theater.

I just want to mention that the downfall of the whole trip was that New York City is that it is so old that it's NOT as wheelchair accessible as other places (like D.C.), especially the metro, stores, Chinatown, and restaurants. I was shocked to find out that there are metro stations that don't have elevators, so the only option is to awkwardly ask for help to get lifted up several flights of stairs, or stop at a station that does have an elevator and take the bus or walk to your destination.  Now, my sister and I didn't know about this beforehand, so we encountered some problems. Also, signs were not helpful for visitors, especially those looking for accessibility. Also, not all buses are wheelchair accessible, so your best bet may be an accessible taxi. Try AccessibleDispatch and they will not charge you extra for the wheelchair.  

Nonetheless, exploring the streets of NYC continues to entice me.  Nothing that a traveling wheelchair can't handle. There's just something about this city that makes it so exciting for me to even think about visiting...just don't use the metro!

Thursday, July 5, 2012

Rough Day on the East Coast

Last week, I decided it was time that I take advantage of my time on the East Coast, and explore a little bit, especially because I got the whole week off from work. My sister, Molly is living in NYC for the summer so I purchased my ticket online via Washington Deluxe to go visit her. I had a hunch that something was wrong when I did not see any information on the bus website about wheelchair accommodation, so I wrote a note when checking out that I needed wheelchair accessibility. Since the picture online of the bus showed a ramp door on the back of the bus and there was no indication otherwise, I figured and hoped that would be sufficient (booking these things is always so inconsistent). Sadly, when I called them in the morning of the trip to check up with them on accommodations, I learned that wheelchair accessibility was not available not available on that bus and they didn't check the note that I had put in ahead of time. I was less than pleased with the lady over the phone. She was so ornery and continued to blame me for the booking. She told me the only way to get to NYC on their bus was to wait until the next day. I really didn't know what to do at that point, so I just had to cancel. It so hard not to feel frustrated and stressed out a bit.  

 Fortunately, I was able to book a wheelchair accessible bus with another company, Megabus for that day. The ladies I spoke to were so very polite and patient with me. Although, they taxed on some extra fees for booking over the phone. I don't think those with disabilities should have to pay that because we HAVE to book over the phone to make sure bus companies can accommodate us, but there are many things in the life of a person with disabilities that we need to fight for in order to allow change.

 Anyways, I headed towards the Foggy Bottom metro station with my bags. I made it to the platform when this man came by and asked if I had a $20 bill to exchange for his two $10. I said sure, although I thought it was weird that he was asking for that instead of breaking a bill like most people. I handed the bill to him and he held onto it with a grip before letting go of his ten's. Then, he said, "Oh, this is a $1." I replied, "Ooops, I must have grabbed the wrong bill for you. Sorry." What? I was so sure I handed him my only $20. So I went through my purse again and couldn't find it. So I apologized and just took back "my" one and gave him back his ten's. I stared at him, then the money in his hands, and then my purse. I was so confused at what was going on. He repeatedly said, "These are real. These are real." That was an indication that I had been tricked. I wasn't sure what to do in this situation. Naturally, it made me frustrated, but I had to move on. But this really didn't help my rough day. Uggghhhh.

After missing my stop, having to back track, waiting in line for an elevator that clearly had written on it, "Please give priority to persons with disabilities," while able-bodied people got on and off, I finally got to Union Station where the bus was to pick up passengers. It was difficult to find it because it was on a different floor, which explain customer service couldn't explain how to get there but the general location and didn't know where elevators were (because they didn't need to use it, which is good thing they don't use it, but bad because I needed it). I struggled to find it all by myself, but made it. I got to the bus personnel and showed them my reservation, and then I saw the panic expression on their faces. They didn't have wheelchair accessibility. What?!?? I called the company ahead of time! Everything built up and exploded. I couldn't keep the tears from filling my eyes and rolling down my face, uncontrollably. Disappointment and anger entered and a bazillion thoughts and questions went through my head. I was so, so tired of things not working out today. I couldn't understand why everything was happening. I just wanted to disappear. I really wish there was someone there with me.  I missed AJ so much…he's the one that usually makes things possible and would just swoop me up into the bus seat without thinking twice about it, then he would pack away my chair, and we would both be on our way to adventure together...

In the midst of everything, one of the personnel guys asked me if I was OK and tried to make me smile by cracking jokes. He said I was too pretty to cry (just like what my mom used to say). I told him I was having a really tough day. He asked if I had been praying. I said, "Yes, I prayed this morning." "Well," he said, "You've got to keep praying. God is listening to you. He may not answer you today and He may not answer you tomorrow, but He will answer you. You've got to believe that He is there and that He will do what He said He would. When you believe, He will bless you." I believe Him. My heart calmed down.  And then with the help of the personnel, I made it on my bus.

Gosh...what an emotional roller coaster ride. Lately, I've been questioning my beliefs and trying to sort things out in my mind. This experience has been such a challenge for me to do by myself. I felt so alone. I wondered why everything was happening. But that note from the kind man reminded me that God was and is there for me during those moments. I needed to turn to Him. He gives me hope, which gives me a positive, which would lessen the challenge, no matter how difficult it may be.  I realized something back when the accident happened but just forgot in the chaos that I was living a dependent life as much as I wanted to live an independent life, but that dependency was more on God than anyone else, which is the way it should be.  I thank God everyday for my life and I know that the things I'm going through are only for a short time.  I've been wondering a lot about why things happen and what I can do to make those things worth it.  I feel that this whole experience has taught me not only to navigate an ablelist world, but to really stand up for what I and many others with disabilities need--to make them known and help who are not in the same situation understand what we as persons with disabilities go through and help them address those issues because they can't know without us.  I'm not sure if this is my life's mission, but I'm sure that it can lead me down a very interesting road, that can help many lives.  The key is to stay positive, knowing God is by my side.

In the end, I finally made it to see my dear sister, Molly, who made me feel all better inside. I'm so grateful for this best friend/sister of mine. I love her so much!

Monday, July 2, 2012

The Day Allie and Martina Almost Died

My roommate, Allie and I went on a speedy adventure uphill toward DuPont Circle from South Hall to attend a vigil. On the way, we braved the 104 degree heat and humidity, through heavy traffic (probably not the safest thing to do) and crowds of tourist, with people jumping out of the way from all directions.  We got there all by ourselves in record time: 25 minutes.

I'm so glad we made it because the vigil was held for two girls of the LGBT community, Mollie and Kristene.  Mollie was shot to death and Kristene is in critical condition.  This was presumed to be a hate crime, but has not been confirmed yet.  We listened to messages from various people of the community.  I came away feeling very down and confused over what happened, questioning the reasoning behind this act, and realized that there is none.  This was nothing more than an act of hate and violence, which should never be accepted nor tolerated.  I thought of these girls as human beings just like all of us, with feelings, thoughts, families, and friends of their own.

Anne, Danny, Allie, and Me

As upset as I was because of this story, I felt inspired to prevent this act from continuing by making it known to all of my friends and family that this is unaccepted behavior and we, as a community, must work together to build stronger relations and understanding of each other.

That night, Allie and I set out on another adventure for ASL open mic night at Bus Boys and Poets at U Street.  When we hopped off the metro, we sensed something coming on as a huge gush of wind blew sand and dust into our faces, disabling our ability to see clearly, let alone control our wheelchairs.  So, we found cover under a Starbucks onning, put on our breaks, one arm on each other and the other on a door bar.  Despite our attempt, the heavy wind knocked us back and forth.  Intense! Luckily, a crowd formed around us to shield us from the crazy winds.  When the wind let down a little, we decided to brave it and headed towards the show.  However, before the end of the second block, heavier wind and rain came down on us.  We suddenly became very afraid that mother nature was quickly turning against us and things could get ugly really quick.  We stuck close by each other as best as we could.  We found cover in a restaurant, which provided temporary relief.  After about 15 minutes, we decided that we needed to get to the show that we came so far to get to, which was a few blocks away.  So we braved it.  We arrived in one piece, totally drenched in water to a well-worthwhile show.  For the next three hours, we sat in our soaking wet clothes watching one of the coolest shows ever. People went up and signed to rap, soul, gospel music, danced, and told jokes to us.  It was so beautiful and so cool.  Note: bring ear plugs!!!

Yes, we had a very jam packed day of adventures, but so worthwhile with a great companion.