The Future is in Youth

The disability rights and justice movement is dependent on the next generation of youth leaders: young adults with disabilities who can take the movement to its next levels. Although there may be debate about where and what those next levels are, youth engagement is crucial. Thus, there are various facets of the disability community that are fostering the growth of young disabled leaders. Some of the major programs include the AAPD Internship Program and the Youth Leadership Forums for Students with Disabilities. I have been privileged enough to attend both the California Youth Leadership Forum (YLF) in 2009 and obviously, the AAPD Internship Program. Each program has a different premise yet they all display a strong commitment to sharing the knowledge of disability rights and empowering individuals to self advocate and embrace their place in the disabled community.

Whenever someone asks me about a life changing experience, why I am in DC, or why I am passionate about disability, the answer is always YLF. In fact, the YLF program lead me to this very blog post and this amazing AAPD Internship Program. Every year, 60 youth with all types of disabilities, invisible and visible, are brought to Sacramento, California to learn about disability identity, culture, history and pride, self advocacy and leadership. It is a transformational program that provides love and support to community leaders. Ever since I was fortunate enough to attend in 2009, my life turned upside down. I felt a part of something bigger. I felt proud to be disabled. I wanted to create tangible change in my community and my state. And most importantly, I wanted other youth with disabilities to experience the same type of change.

Therefore, I want to spread the word and ensure that as many youth have the opportunities to feel proud of their disabilities, learn about their history and understand their civil rights. This summer was especially meaningful because as a member for the 2012 AAPD Internship Program, I staffed YLF California as a Peer Counselor. Last week, I was able to work with other leaders in encouraging, teaching and celebrating the 60 young attendees of the program. I was able to witness and support the growth of young people with disabilities, and I could not be more thankful. And at the end of the week, after they had learned an immense amount of information, the youth asked themselves: now what? Programs were discussed that they could join, such as YO Disabled and Proud, Independent Living Center programs, and for one of the first times, the AAPD Internship Program. I was honored to share my experience and suggest others to find out more and apply. Many individuals were interested and I am grateful to have had the opportunity to share this opportunity with many potential interns.

It is with the conclusion of this year’s YLF that I remember the significance of youth engagement and that the disability community must remain connected and transparent so that all youth with disabilities can have the similar opportunities that I was and still am so fortunate to have.

Disability is Diversity

This week, I was invited by my mentor, Sofija Korac 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.

Almost there!

This week has been the usual hectic week for me.  Yet, I still believe that my time here was all because of the divine’s will for me!  I have experienced many wonderful moments with fellow interns and realize that I have made life long friends with some. 

I have decided to remain positive for the remainder of the time here.  I feel like I have so many places I want to visit before I leave.  Nevertheless, I will do only do what the Lord allows me too. I have a strong faith in him for he has told me that “No weapon formed against me shall prosper”.  I believe his word and will continue to honor him.

As far as work is concerned, I am involved on many wonderful things and I have met a plethora of persons that have inspired me to reach higher.  I love the idea of seeing persons that look like me working in an administrative capacity. Thank God for my work experiences.  I now have taken the blinders off and see pass my circumstances.  I live life without limits. 

I must say that I have grown through my experiences in DC.  I have always respected the individuality of others and D.C. definitely offers diversity.  Diversity in the arts, entertainment, cultures, religious experiences, etc. is definitely an amenity within the city.

I also recognize the hustle and bustle of the city.  I sometimes feel like it is a survival of the fittest type environment.  You have to hustle align yourself with persons that have good character and will not “step on and over” you for self serving reasons.  I am staying aligned and aware.  For I know that the best is yet to come.  I am energized and ready to run the race in DC.  I want to have a better understanding of the reason I have endure certain unpleasantries on life, but I know that I will be able to use these issues as a testament to someone life. 

ADA Anniversary

On Thursday, July 26, I had the opportunity to attend the National Council on Disability Swearing In Ceremony at the National Archives of Records Administration Rotunda.  It was a very poignant moment, to be sitting there on the 22^nd Anniversary of ADA, with the actual Constitution directly in front of us, the Declaration of Independence to our left, and the Bill of Rights to our right.  I was also thrilled to meet NCD members from my home town, Albany, New York—Mr. Chester Finn and Ms. Stephanie Orlando.  There was a reception after the ceremony, where I got the chance to network with others who are passionate about disability rights. 

Afterwards, three of us climbed into a taxi in order to make it to the CRPD markup.  Dirksen was filled with disability pioneers and advocates who had been working so hard for global disability rights and the ratification of the treaty.  It meant so much to be a part of such an historical moment.

Afterwards, we went to Union Station for lunch, and then made our way to the Botanical Garden, where the interns convened before walking over to the Capitol together for a group photograph.  It has been such an honor to get to know all of the interns over the summer.  Everyone has such incredible passion, and you all inspire me to the fullest.  

Now we moved on to the Cannon Building for the And Justice for All awards, where I was further inspired by Jim and Carrie’s speeches.  Finally, it was time to go, and head off to my second Diva Dinner at Fire and Sage.  It was an unforgettable day.

Dyslexic Self Advocacy Network

Note to Reader: This blog post is about dyslexia so I have made the choice not to spell check my natural spelling

I had the opertunity this week to meet Andy Imparato and Senator Harkin for the first time in person. When I brought up the subject of dyslexia, Andy asked me if I would organize the demographic. “We have some parent groups,” he said, “but I want you to organize adult dyslexics.” When I hesitated mementarly Andy said, “just say yes.” And so I did.

I had never really thought of dyslexia as a parent-dominated disability or likened it to the issues suranding autism and self advocacy. But Andy’s order made me consider it differently. I had been aware for some time that none of the top dyslexia researchers and authorities were dyslexic themselves—mostly parents, at best with a once removed relationship to dyslexia—but had never given it much thought. But when I got home from the event where I had met Imparato and Harkin, I traveled to the International Dyslexia Assocation’s website and viewed their boad of directors. Only two out of twenty-one board members were dyslexic themselves. At once I proceaved the problem Andy had aluded to.

How strange it is that such a glaring issue in the dyslexic community had aluded me for so long. Of course self-reperesnenion and advoacacy are important in both research and public policy. What could be done? Ari Ne’eman’s Autisic Self Advocacy Network provides a great model for a disalbity rights organization run for and by people with autisom. Dyslexic Self Advocacy Network? Sounds good to me. Let me know if you want to help.

Simplicity

My weekend has been one of the best I’ve had in DC thus far. I didn’t eat fancy meals or attend important events. I didn’t meet any prominent political figures or build my network. I did absolutely nothing productive, and I’m absolutely with fine that. Sometimes simplicity is bliss.

Instead of rushing to the metro on a time crunch, I kept near the apartment without a set schedule and checked out the local entertainment that the area had to offer. While seeing monuments, visiting museums, and shopping are great ways to spend time in DC, one must not forget to relax, and most DC interns would agree that open schedules and carefree weekends don’t happen very often. I’ve stayed up late playing card games and watching movies with the other interns and have slept in until at least 1:00 p.m. each day. Enjoying fresh air outside in the sunshine, a group of us gathered in the courtyard to socialize and compare our experiences. I must say that I wish we interns had more opportunities to come together and chat about our best and worst moments this summer—our successes and challenges at our internship sites and with the program itself. During our conversations, I felt like we were a group unified by our passion for advocacy. My class of interns is a strong support system that won’t be broken when we part our separate ways. We are the future of the disability community, and from what I can tell, the future looks promising.

I am...

This week as felt like another whirlwind of sorts. I feel like much of my time here has gone by way too quickly. It is also hard to pick a highlight from this week to write about in particular. This past Thursday was absolutely amazing. First off, the CRPD got sent to the Senate floor! After the CRPD mark-up I went to AAPD’s “Justice for All” Award Ceremony and ADA celebration. I heard many inspiring stories there but I think what struck me most were Joyce Bender’s words, “I am Epilepsy.” Before this internship I would never have had the courage to say, “I am Cerebral Palsy.” For most of my life I was taught that my disability made me  “a problem,” “a burden,” and “an incompetent person.” As much as I have tried to tell myself over the years that those things were lies I lived like those lies were truth. I tried to live like I didn’t need help, like I could do anything anyone else could (possibly even better) and like my life was not any different from anyone else’s

I tried to live under the statement of “I am Normal.” I thought for a while, that I pulled it off pretty well. Then, I go hit with a neurological disability that made my act a little hard to keep up. Now, I have applied for a mobility dog to help with the neurological issues. I had been encouraged for years to get a mobility dog but for years I avoided it because I lived in places that were not considered “disability friendly” and I didn’t want to be the woman who was treated differently because she had a service dog with her. I wanted to hide my disability, to the point that I had begun to endanger myself. I was willing to live dangerously just so I could say, “I am Normal.” When I heard Joyce shout from the podium on Thursday, “I am Epilepsy” I wondered in my heart if I would ever be secure enough in the way I was created to shout, “I am Cerebral Palsy.”  I think applying for the mobility dog was the beginning of working up the courage to do so.

Yesterday, I also went to Philadelphia for their first ever disability pride parade. I was totally honored to be a part of that event and I was glad I went. The time I will most treasure though is being with Yoshiko in 30^th Street Station for two hours (our train was very delayed). First of all, I love her and I am amazed I had the opportunity to meet her and get to know her. She is so encouraging. She talked to me about Justin’s dreams and how the world needs people with disabilities who are willing to lead and be involved in politics. She told me I could be a leader. I think, though, that to become the leader Yoshiko encouraged me to be I need to be confident in who I am and who I have been created to be. I need to be able to confidently shout,

I AM CEREBRAL PALSY!