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FARAFARA Cure FA

The Maryland Youth Leadership Forum

The Maryland Youth Leadership Forum (YLF) prepares a select group of 30 high school juniors and seniors with various disabilities for an independent, hard working adult life. This past week YLF held its annual three-night camp at Towson University, near Baltimore, full of leadership activities and guest speakers and teachers all with disabilities. The program is sponsored by Independence Now, the Center for Independent Living I used to work for. I was invited to be a group co-facilitator for the week. The following is my experience at the 2013 YLF camp.

I arrived at Tubman Hall in the West Common Village of the suburban university on Tuesday morning. The six co-facilitators and eight co-counselors had a staff meeting where we received our binders containing the packed itinerary for the week and our official, black, staff t-shirts. This dormitory was built two years ago and every room had amenities like a fully accessible bathroom, fridge and microwave.

At 11 I headed downstairs to welcome the YLF Delegates, as they were called, and led a herd of kids, many of whom were away from home for the first time, through the quad to the ballroom where they received their binders full of activity sheets we would be working on throughout the week, and their red, gray or blue shirts signifying their group. I had The gray group, an especially chatty bunch. 

 

We heard welcoming remarks from the Secretary of the Maryland Department of Disabilities who congratulated everyone on being selected to attend. He reminded everyone that we are here to learn and take away skills that will help us succeed. And to share. Be open. We get out of it what we put into it. This helped put the week, and beyond, into perspective for me.

We broke for lunch. The cafeteria was in the same building, another nice convenience from Towson University. I am not a food critic, so I will say only that the pizza was pretty good and the salad was pretty good. And the mocha frozen yogurt was awesome. It was interesting to watch the delegates at meals, the cliques forming and growing, the shy ones sitting by themselves. I'd seek out the shy ones.

We returned to the ballroom and split into our groups to work on our first activity- a look at the history of the American Disability Movement. Each group was assigned a time period and 10 events to put in chronological order such as the writing of the original Diagnostic and Statistical Manual of Mental Disorders and the passing of the Americans with Disabilities Act (ADA). My group's time period was 1775-1900. I was not much help.

We played ADA Jeopardy where all of the categories had to do with resources and accommodations currently afforded to Americans with disabilities. Delegates drew responses from our earlier history lesson and their own experiences.

'The R Word,' a documentary on the use of the word 'retarded' and the impact it has on the lives of folks who have been hurt by it set a tone of respect for the week. Everybody in the room could relate as we shared stories of words that had been used against us. We vowed not to be hurt by them any more when we wrote the words on the notecard and sent it through the paper shredder. YLF3

Dinnertime and then back to the ballroom for a game of Guess My Job. A panel of professionals took yes-or-no questions from the delegates about their work. Despite some great questions, we were all stumped by the interior designer and the online college bookstore manager.

The final activity was Speed Mentoring. The delegates split into groups of five and talked with each panelist for five minutes about what he or she had to do to achieve personal success. Then we ate candy, went back to the dorm, threw on Hunger Games and called it a day. A long and satisfying first day.

Awake at 7:30 for day two and I still missed breakfast. We began in our small groups to discuss the qualities of a leader and what qualities we posses. We talked about the responsibilities of independent living, the sacrifices that go into it, the rewards that come out.

In the afternoon we had the Assistive Technology fair. One exhibit demonstrated cooking utensils to be used by someone with limited wrist movement. At another station a blind man showed us the special GPS system that guides him around town, and the brail label maker he uses on his microwave buttons. We saw iPad apps that remind someone to take their medicine.

That evening was the talent show. 14 acts sang, danced, acted, read original poetry. And at the end they all did the Cupid Shuffle together. Twice. This was a rare period when I could just sit back and take in what I was witnessing. It still gives me a smile.

The third day was legislation day, to teach the delegates the process by which a law is made, from beginning to end. Legal professionals came in and the delegates entered into a mock situation where they wanted to pass a bill that would add 60 minutes a day of physical education to the local elementary schools.

The delegates developed a campaign to gain grassroots support in the community. Once their points were organized they took the bill to local representatives and provided testimony for why the bill should pass. They were taught how to conduct themselves in a professional manner, how to listen, how to speak clearly and directly.

We heard from Junior Miss Wheelchair Maryland who in high school tried heroin one time, overdosed and woke up six months later paralyzed.

That night was the dance. Another opportunity for me to watch the delegates let loose and enjoy themselves. Every single one of them hit the dance floor for at least a few songs, some with reckless abandon. They really are fearless.

On the final day we met one more time in our small groups and talked about our circles of support and who we can turn to, from our best friend to our parents to the police, when we face different levels of trouble. We acted out some conflict resolution scenarios using aggressive, passive and assertive personality types to see which yielded the best outcome. When acted out properly, 'assertive' proved to be the most effective type. We finished with a graduation ceremony. I was proud that all 30 delegates made it the whole way without a single fight or serious curfew violation, and that I did too. Shaking the hands of their beaming parents made any discomforts of the week worthwhile. I am thankful for the opportunity to be a part of a positive change in these transitioning youths, mostly to Kim Wilhelm, the director of the 2013 Youth Leadership Forum. It was an inspiring week for me, meeting and talking with people who, in many different fields and walks of life, have overcome whatever obstacles have stood in their way. They have excuses to use, but they don't. Now, 30 YLF alumni are equipped to live the same way.

John

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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