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Fall 2008

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SYF News Quarterly Newsletter

from Governor Napolitano, the group of YAC!AZ members and friends were taken on a tour of the Capitol. We learned about and were able to see a lot of Arizona history such as the State bird and State snake. To me the most interesting was the USS Arizona; the whole exhibit was phenomenal. My overall time with the group and attending the event was a great experience.

In August, I was asked to write a speech for the July 25th anniversary celebration of the Americans with Disabilities Act (ADA) at the State Capitol. The opportunity to present at this major event was very big for me. My speech was about my reasoning for voting in the United States. My experience at the ADA event was great. I was so happy to meet new people and enjoyed hearing other people’s speeches.

ADA Anniversary Celebration Speech By Sasha Mandel

After the speeches and the Big speech

Youth Action Council of Arizona (YAC-AZ) & the Set Yourself Free Grant By George Garcia Set Yourself Free is a three-year grant from the Administration on Developmental Disabilities (ADD) awarded to Southwest Institute for Families and Children (SWI). The goal is to create a network through which youth and emerging leaders with a disability can connect physically, and virtually, to share information on a variety of different issues such as health, education, employment, and social services. The information system will be created and updated by youth as they find information that is important to them on the community, regional, statewide, and nationwide level. To organize youth at the local level, Set Yourself Free is implemented by Youth Action Council of Arizona (YAC-AZ). Through YACAZ, youth, ages 14 to 18 for young (continued — page 3)

Sasha Mandel, YAC-AZ member, speaking at the State Capitol

in this issue YAC-AZ & SYF Grant


ADA Anniversary Celebration Speech


Opinion/Editorial Disability Activism


Current Events Report on the 2008 ADE Transition Conference


Emergency Evacuation Plan at ASU Needs Improving


Spotlight: Employment Interview 5 Writer’s Corner


Real Life My Trip to Washington, D.C.


Community Calendar


Good morning Governor Napolitano and citizens. My name is Sasha Mandel. This year I (and many others who were born in the wonderful year of 1990) have a new right, or should I say responsibility? This responsibility allows generations to see us as emerging leaders. Voting is something many of us have heard of for a while. We may also have heard a debate between two teachers, fellow employees, or even parents as to whom they are voting for and/or why. This brings to mind a central question we may have as we enter the voting community — “How do we get information?” So, how do we get information? I have personally watched debates and read newspapers, as well as research candidates on my own. During high school government class, I learned that you should not choose a candidate simply because that’s who your buddy chose. It is important to do the research yourself to find out about a candidate and their position on the issues. It doesn’t have to take a lot of time; one of my favorite ways to decide who it is that I (continued — next page)

(continued — ADA Celebration Speech)

would want to run the U.S. is to have a discussion with many people from different backgrounds and with varied opinions. When you ask someone their opinion they usually give a reason as to why they prefer that candidate. For example, the pro-life/pro-choice topic is a huge issue and people may choose a candidate based solely for their views on that one subject. But it is also important to know how candidates stand on other issues – this is where researching candidates comes in. Voting is exciting because each of our votes count in the long run and is vital to the process, whether the person we voted for was elected or not. It does make a difference as it can and will change our future in many ways. Voting gives us the power to make things better for ourselves and for our community. Voting is a huge responsibility. If we did not vote, we would not have schools, health care, and some of the other privileges that we are afforded. Years ago, women and African Americans were excluded from voting—this makes voting even more of a privilege and a responsibility. Besides availing ourselves of this important right, voting is our obligation to make this a better country! We need to step up to the plate and hit a home run by voting. Voting is a right and a responsibility! So join me and exercise our new right and responsibility. Let’s vote from here on in! (See inset, right, for

By Becky Parpart

I think it’s important to first open with a colossal thank you to former activists who have paved the way for us today. They have helped to make our generation’s life better and as a result, we have more choices and freedoms than they did. The Disability Rights Movement sparked the beginning of great change that still continues today, and it needs YOU to help fight against the discrimination and non-accessible society that still remains. It is crucial that youth become involved and stay active in the Disability Community and continue to carry the torch that so many people fought so hard to light. So, once you decide to become involved, how will you identify? There are 3 terms that are frequently tossed around in our community to label people who fight for the rights of the disabled: advocate, self-advocate, and activist. Now, though, not everyone agrees with me on this issue, I feel very strongly about the effect that

online voting resources). !

SYF News

opinion / editorial

Disability Activism: Get Involved!

Fall 2008

words have on our community and how important it is for us to choose our words wisely when setting an example for the able-bodied community. When I hear the word advocate, I shudder. The definition of advocate is “a person who pleads for or in behalf of another” ( This term is completely insulting. It implies that people with disabilities need others to speak for them. That they, themselves, do not have a voice and are too weak and powerless to take control of their own lives. When others speak for you, it takes away your power to choose. On the other hand, the term activist is defined as “a person who is vigorously active and aggressive in support of a cause and leads change.” This is a very empowering term! This is a positive term and shows that a person is hard working and unwilling to back (continued — next page)

November 4th General Election "#To vote in AZ, you must be registered by Oct. 6th! "

Arizona Voter Information (how to register, find polling locations, election information) ! Project Vote Smart (non-profit, non-partisan political research group) ! National Council on Independent Living - Vote 2008 !


get involved!


Start by contacting these organizations:

! Arizona Centers for Independent Living centers.asp (directory) ! COMPASS (Disability Support and Activism Group) Contact Susan DeNova (602-470-1802, x110) ! Kids as Self-Advocates ! People First of Arizona Contact Monica Cooper, PF President (

(Continued ! Disability Activism )

down to injustices that they face. They proudly identify as a person with a disability and make changes happen. They simply don’t sit back and let others speak FOR them! So, which do you want to be??? An advocate? Or an ACTIVIST! Now, remember, no matter how you choose to identify, we need YOU to continue the hard work started by people such as Ed Roberts, Justin Dart, and countless others. If you don’t know who these men were, Google them! They are famous activists that changed our history, yet you don’t read about them in history books! Because of them, we have come so far, but there is still so much to accomplish and improve. You must not settle for the current; push the limits! Change creates opportunities for everyone! You CAN make a difference in your community, so get involved! Just remember, the sky is the limit! !


(continued — YAC-AZ & SYF)

adults and 19 to 30 for emerging leaders, will organize at the local level and have the ability to meet, interact, and work with other youth leaders who have disabilities in their communities. Since its inception, YAC-AZ has consisted of youth who sit on the youth governing board and work hard to set an agenda in compliance with YAC-AZ goals. To this end, members undergo training in life skills that teach the necessary skills to live healthier and more inde-

SYF News Staff

! Self Advocacy Coalition of Arizona (a project of the Governor’s Council on Developmental Disabilities)

YAC-AZ members touring the State Capitol

pendent lives within their communities. YAC-AZ is continually recruiting new members. If you are interested in becoming a youth community leader, please contact George Garcia (g.garcia at 602-443 -0706 or David Carey ( at 602-4430723. You can also go to http://nyra.meetup. com/51/ to access the YAC-AZ Meetup page. !

Brooke Brown, Editor & Staff Writer Liliana Flores, Staff Writer George Garcia, Staff Writer Tim Hults, Photographer Zachary Khazanovich, Staff Writer Becky Parpart, Op/Ed Writer

SYF News

Fall 2008

current events

Report — 2008 ADE Transition Conference: Transforming Visions to Realities By Brooke Brown

Collaboration will carve the way to independence. That was the overwhelming message of the Arizona Department of Education (ADE) Transition Conference on Sept. 22-23 at the Radisson Fort McDowell hotel. Perhaps this state is finally beginning to understand the needs of youth with disabilities. It always warms my heart with renewed hope for the future when I come across another person living with cerebral palsy who has pursued a successful career in the arts. Listening to comedian/actress Geri Jewell speak at the opening breakfast on Monday did just that. Through her humor, subtle poise and the wise words of her idol, Carol Burnett, Geri encouraged the audience to attempt to succeed at their creative passions before setting them aside to pursue a “practical career for a disabled person.” Her life story will be a permanent reminder that I don’t have to give up who I am or the things I love just so I qualify for Vocational Rehabilitation’s assistance. The rest of Monday was spent helping Priscilla Perkins at the YAC-AZ table. It’s always interesting and enjoyable to meet new people in Arizona’s disability community. My reward is found in the delighted faces of the youth and their families when they discover that YAC-AZ is a group in which young adults can feel accepted, encouraged and grow into strong leaders.

SYF News

Fall 2008

That evening, fellow YAC-AZ/ Set Yourself Free leaders, Jay Dashefsky, George Garcia, Liliana Flores and I met with representatives from the Pennsylvania Youth Leadership Network (PYLN). During this time, we shared stories and traded ideas of how best to motivate youth with disabilities in our states to become productive self-advocates. It was very refreshing to see a different perspective on a common goal. On Tuesday, my day began with learning about the components of a successful transition

Brooke Brown, YAC-AZ member, at the ADE Transition Conference

journey for a student with a cognitive disability. The student must always actively participate in three intertwined elements: transition services, their Individualized Service Plan (ISP) and Individualized Education Plan (IEP). Since the student is likely to be receiving services outside of school, such as psychiatric therapy or job coaching, the student should be encouraged to have those professionals at the same

table with their teachers and school administrators. That way, they can give the youth guidance from all aspects of their life and help them devise a single set of attainable and desirable goals without gaps in the steps needed for followthrough. The next session I attended discussed assistive technology and was presented by the Arizona Technology Access Program (AZ-TAP). People often assume assistive technology only refers to augmentative communication devices. However, AZ-TAP runs on a grant through NAU and maintains a warehouse along with an information center of all the latest adaptive equipment. It is the belief of AZ-TAP that having any type of physical disability should not stop a young adult from growing into a life of independence and doing the things they enjoy. Therefore, they will loan or assist a youth in need with purchasing things such as adaptive cooking utensils, driving aids, vision aids, or even specialty wheelchairs and communication devices. “Just because you have a certain disability doesn’t mean that there is only one piece of equipment that will work for you. We try to find what works best for each person,” says (continued — next page)


(continued — ADE Transition Conference)

Randy Collins, Head of AZ-TAP. Every youth with a disability in Arizona should meet Collins and think of him as the “Inspector Gadget” of accessibility. Check out the new and improved for more information. As the day came to a close, I found myself trying to make sense of the Social Security Disability Benefits Program. The details still remain a bit confusing, as do all regulations for government agencies, but basic breakdown is this: at age 18, a person with a disability can apply for SSI (supplemental income) if they have no prior work history and their parents’ or guardian’s income meets the limit for assistance. A person over age 24 with a disability and prior work history would need to apply for standard disability assistance (SSA). Further information can be found at All in all, I left the ADE Transition Conference with a healthy portion of useful knowledge. Seeing how I am nearing the end of my “transition years,” it makes me happy that I will now be able to help the next generation of youth with disabilities find the pathway to independence we all desire. ! Check out Brooke’s website and learn about her new book at http://www.

Speaking Out — Emergency Evacuation Plan at ASU Needs Improving George Garcia, SYF Youth Coordinator, and Donna Powers, AZ Statewide Independent Living Council (SILC) Program Coordinator, spoke with Channel 5 News reporters about critical changes needed in Arizona State University’s emergency evacuation protocol for wheelchair users. View the news clip which aired on September 16, 2008 at http://


spotlight: employment

Interview with Liliana Flores By George Garcia

GG: Hi Liliana. Would you tell us how old you are and what your disability is? LF: Sure, I’m 22 yrs. old and have cerebral palsy. GG: What do you do for work? LF: I am a office assistant. I do office work like copying, faxing, computer work, mailing checks, etc. GG: How long have you been working? LF: I started work on June 2, 2008 at the Central Arizona Council on Developmental Disabilities.

Liliana Flores, YAC-AZ Member

GG: How did you hear about the job? LF: From my DDD case worker. GG: How does your disability affect your work? LF: By not doing things fast, and understanding all at once. GG: What type of accommodations do you utilize at your work? LF: More time, an adapted laptop with a special keyboard, and sometimes help from others. GG: Who helped you get those accommodations? LF: VR and DDD GG: Are you happy with your work? LF: Yes, very much! GG: What do you see yourself doing in 10 years? LF: Having my own business to help other people with disabilities. GG: If you could say one thing to a person with a disability who wants to start to work what would it be? LF: To go for it because if I got a job, anyone can! !

Do you have news items to submit for our winter issue? Have questions or comments about SYF News? If so, please send them along to George Garcia (

SYF News

Fall 2008

Poem ~ Undercover By Brooke Brown

writer’s corner

Undercover This body of mine, Rigid and stubborn, Is not what it appears to be. Peculiar as that might seem, this body of mine is a clever disguise, you see. It has many secrets to keep, For the treasure inside is quite enchanted, Some may even call it divine. My true form, Heaven made the wise decision to hide. A very strange place for a dancer’s spirit to reside, With muscles that must struggle to both straighten and bend. It’s always a hard disjoint to mend. Still, listen to my words with willing ears, And there’s a sweet song that you’ll hear. The music in my heart, it’s God’s creation, Beating with continually changing rhythms and melodies. Allowing my mind to spin an unruly clutter of words into dances, That would prove physically impossible for my curved spine and uneven hips. Neither beautiful fluidity, nor perfect precision will ever take up direction, Over all my muscles, joints and bones, And their involuntary motion. But there are a few, who know it’s only a tender precaution, Taken in order to protect the treasure inside. One willing angel on a mission. This body of mine, It’s just a clever disguise.

what’s in the next issue [Jan 2009] of SYF NEWS? !

YAC-AZ on Navajo — Navajo members of YAC-AZ describe their experiences (things that help and things that are needed).


What’s happening at Southwest Institute for Families and Children (SWI).


How these organizations are partnering with YAC-AZ and the SYF grant: Arizona Bridge to Independent Living (ABIL), Pilot Parents of Southern Arizona, Sonoran University Center of Excellence in Developmental Disabilities (UCEDD).

SYF News

Fall 2008


real life

On July 9, 2008 the Administration on Developmental Disabilities held its annual conference for Youth Information, Training & Resource Centers. Representing one of the 21 new resource centers developed this year, Priscilla Perkins and I attended the conference for the very first time. This conference consisted of a two-day event held at the Ritz-Carlton in Washington, D.C.

My Trip to Washington, D.C. commodations I needed. By George Garcia

trip. Obviously, I would need my wheelchair. I also would need enough medical supplies to last me while I was away from my home. Transportation would also be key. How would I get from the airport to my hotel and back again once I was ready to go home? Finally, would the hotel room be accessible?

While being in Washington, D.C. was an amazing opportunity for me, I now understand why it is said that getting there is half the experience. No truer words could be spoken, especially when traveling with a disability. All those who use a wheelchair gather round to hear my story. A journey of 2000 miles always begins with the first step. For me, the first step of my journey began weeks before the day of my flight. To ensure that everything went as smoothly as possible, planning was key. Once I reserved my flight, I had to make sure all accommodations were in place to ensure that I, and everything I own, got safely to Washington, D.C. and eventually back home. So I wouldn't forget anything, I wrote down the kind of accommodations I would need for this


George Garcia, SWI Youth Project Coordinator, and Priscilla Perkins, SWI Project Coordinator, at the ADD Conference in D.C.

The first thing I did, once I had an idea of what accommodations I would need, was to call the hotel to reserve rooms for my family and myself. I told them that I used a wheelchair and I would need a room with a wheelchair accessible bathroom. Also, since my family provides assistance for me, I told them that I needed rooms that would be as close together as possible. The hotel was very helpful in providing the ac-

I reserved my flight online, but then contacted the airline to tell them that I would need accommodations. They asked me questions related to the type of wheelchair I use and the nature of my disability. These questions were important because it helped the airline to determine what type of accommodations would best help me. After I had ensured airline accommodations, I began to do research on companies that provided wheelchair accessible shuttle service to and from the airport to the hotel. The Internet helped me greatly in finding which companies provided transportation. I chose a company, told them I would need a wheelchair accessible van, and scheduled shuttle service to and from my hotel. Even though I was nervous about traveling so far away from home, I knew I had taken the proper planning steps to ensure a safe trip. When I arrived at the airport, the airline was expecting me and assisted me in getting onto the aircraft. My wheelchair was taken apart and placed in the aircraft’s cargo hold. When I got to Washington, D.C., the airline provided assistance in getting off the aircraft and into my wheelchair. Because my travel to Washington, D.C. went rather smoothly, I was able to enjoy the conference. For two days, I

SYF News

(continued — next page)

Fall 2008

community calendar

(continued — Washington, D.C. Trip)

Compiled by Liliana Flores

Sep 12 – Jan 11 Low and Slow: The “Art” of the Lowrider (cost: $3.50) Mesa Arts Center, 1 E. Main St. — Mesa 480-644-6501 / Oct 4 [12pm—2:30pm] YAC-AZ Workshop: How Work Affects SSI (cost: free) Southwest Institute for Families, 5111 N. Scottsdale Rd., Suite 151— Scottsdale 602-443-0723 / Oct. 8 [7pm] Rock Band Live with Panic at the Disco and Dashboard Confessional (cost: $24.75 – $34.75) Arena, Loop 101 and Glendale Avenue — Glendale 480-784-4444 Oct. 20 – 21 [6:30pm– 8:30pm] Acting Techniques, Improbable Theatre Company Workshop (cost: free) RSVP to the ITC message line, 602-296-0503 Oct. 24 – Nov. 1 A Day of the Dead Celebration! (cost: free) Chandler Center for the Arts, 250 North Arizona Avenue — Chandler 480-782-2680 Oct. 31 [6pm– 9pm] Halloween in South Eldorado (cost: free) South Eldorado Ball Field, 1909 N. Miller Rd — South Eldorado 480-312-2771 Oct. 31 [4:30pm–7:30pm] Haunted Night in the Park (cost: free) University Park, 1002 W. Van Buren — Phoenix 602-262-6800 October 31 [6pm–9:00pm] Harvest Festival (cost: donations only) Scottsdale First Assembly Dream Center, 28700 N. Pima Road — Scottsdale 480-367-3182 / Oct. 10 – Nov. 2 [various times, closed Mon.] Arizona State Fair (cost: $6 – $12) Arizona State Fairgrounds, 19th Avenue and McDowell Road — Phoenix 602-252-6771 / Nov. 1 [12pm– 2:30pm] YAC-AZ Holiday Planning Meeting (cost: free) 655 E. Southern Avenue — Tempe 602-443-0723 / Nov. 29 [5pm – 9pm] APS Fantasy of Lights (cost: free) Mill Avenue — Tempe 480-921-2300 / Dec. 6 [12pm–2:30pm] YAC- AZ Holiday Party (cost: free) Venue: to be determined 602-443-0723 / Dec. 6 [4:30pm–9pm] Chandler Parade of Lights (cost: free) Historic Downtown Chandler — Chandler 480-782-2735 / Dec. 27 [10am–6pm] Light Rail Grand Opening Celebration (cost: free) Sycamore Station (Sycamore & Main Street) — Mesa 480-644-3332 / Dec. 31 [5pm–1am] Insight Fiesta Bowl Block Party (cost: $20 – $25) Downtown Tempe, Tempe Beach Park and Mill Avenue — Tempe 480-967-2001 /


met people from around the country who were doing their part for the disability movement. I attended various breakout sessions that addressed areas such as identifying disability issues in your community and safety planning for people with disabilities. Although the focus of the trip was the conference, I could not miss the opportunity to see various sites around our nation’s capitol. Even though the city has an excellent public transportation system, I decided to rent a van for sightseeing. I visited the Washington Memorial, the United States Capitol building, and the Library of Congress. All were amazing, accessible, and best of all, absolutely free. My trip to Washington, D.C. was very enriching. I learned a great deal at the conference, but more compelling is what I learned from my experience in getting there – I discovered that traveling with a disability is absolutely possible. With proper planning and proper accommodations, there should be little concern about how your disability will affect your ability to travel. ! To receive an electronic copy (PDF) of this newsletter, please send an email message to g.garcia with SYF News in the subject line.

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