SYF_NEWS_Fall2008

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News SYF Quarterly Newsletter

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 physi-cally, and virtually, to share infor-mation on a variety of different is-sues such as health, education, em-ployment, 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 imple-mented by Youth Action Council of Arizona (YAC-AZ). Through YAC-AZ, youth, ages 14 to 18 for young

(continued — page 3)

In August, I was asked to write a speech for the July 25th anniversary celebra-tion 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 experi-ence at the ADA event was great. I was so happy to meet new people and enjoyed hear-ing other people’s speeches.

After the speeches and the Big speech

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 inter-esting was the USS Arizona; the whole exhibit was phenomenal. My overall time with the group and attending the event was a great experience.

ADA Anniversary Celebration Speech By Sasha Mandel

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 responsi-bility? This responsibility allows genera-tions to see us as emerging leaders. Vot-ing is something many of us have heard of for a while. We may also have heard a debate between two teachers, fellow em-ployees, 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 com-munity — “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 sim-ply 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 does-n’t have to take a lot of time; one of my favorite ways to decide who it is that I

(continued — next page)

issue in this

YAC-AZ & SYF Grant 1

ADA Anniversary Celebration Speech

1

Opinion/Editorial Disability Activism

2

Current Events Report on the 2008 ADE Transition Conference

4

Emergency Evacuation Plan at ASU Needs Improving

5

Spotlight: Employment Interview

5

Writer’s Corner 6

Real Life My Trip to Washington, D.C.

7

Community Calendar 8

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

SYF News Fall 2008 — 2 —

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 be-ginning of great change that still continues today, and it needs YOU to help fight against the dis-crimination and non-accessible society that still remains. It is crucial that youth become in-volved and stay active in the Dis-ability 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 fre-quently tossed around in our com-munity to label people who fight for the rights of the disabled: ad-vocate, self-advocate, and activist. Now, though, not everyone agrees with me on this issue, I feel very strongly about the effect that

would want to run the U.S. is to have a discussion with many peo-ple 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 re-searching 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 re-sponsibility. Besides availing our-selves of this important right, vot-ing 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 online voting resources). !

(continued — ADA Celebration Speech)

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 advo-cate, I shudder. The definition of advocate is “a person who pleads for or in behalf of an-other” (dictionary.com). This term is completely insulting. It implies that people with dis-abilities need others to speak for them. That they, them-selves, 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


Disability Activism: Get Involved! By Becky Parpart

Arizona Voter Information (how to register, find polling locations, election information)

! http://www.azsos.gov/election/voterInformation.htm

Project Vote Smart (non-profit, non-partisan political research group) ! http://votesmart.org/index.htm

National Council on Independent Living - Vote 2008 ! http://www.ncil.org/VOTE2008.html

November 4t h General Election

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

opinion / editorial


down to injustices that they face. They proudly identify as a person with a dis-ability 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 AC-TIVIST!

Now, remember, no matter how you choose to identify, we need YOU to con-tinue 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 his-tory, 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 ! Disability Activism )

SYF N

ews S

ta

ff

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

Start by contacting these organizations:

! Arizona Centers for Independ-ent Living http://www.azsilc.org/centers.asp (directory)

! COMPASS (Disability Support and Activism Group) Contact Susan DeNova (602-470-1802, x110)

! Kids as Self-Advocates http://www.fvkasa.org/

! People First of Arizona Contact Monica Cooper, PF President ([email protected])

! Self Advocacy Coalition of Ari-zona (a project of the Governor’s Council on Developmental Disabilities) http://www.selfadvocacyofaz.org/

get involved! how?

adults and 19 to 30 for emerg-ing 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 com-munities.

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-

(continued — YAC-AZ & SYF)

pendent lives within their communities.

YAC-AZ is continually recruiting new members. If you are interested in becom-ing a youth community leader, please contact George Garcia (g.garcia @swifamilies.org) at 602-443-0706 or David Carey ([email protected]) at 602-443-0723. You can also go to http://nyra.meetup. com/51/ to access the YAC-AZ Meetup page.

YAC-AZ members touring the State Capitol

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http://nyra.meetup.com/51/


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 under-stand the needs of youth with dis-abilities.

It always warms my heart with renewed hope for the future when I come across another person living with cerebral palsy who has pur-sued a successful career in the arts. Listening to comedian/actress Geri Jewell speak at the opening break-fast 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 set-ting them aside to pursue a “practical career for a disabled per-son.” Her life story will be a per-manent 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 interest-ing and enjoyable to meet new peo-ple in Arizona’s disability commu-nity. 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, en-couraged and grow into strong leaders.

That evening, fellow YAC-AZ/Set Yourself Free leaders, Jay Dashefsky, George Garcia, Liliana Flores and I met with representa-tives 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 compo-nents of a successful transition

journey for a student with a cogni-tive disability. The student must always actively participate in three intertwined elements: tran-sition services, their Individual-ized Service Plan (ISP) and Indi-vidualized Education Plan (IEP). Since the student is likely to be receiving services outside of school, such as psychiatric ther-apy 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 follow-through.

The next session I attended discussed assistive technology and was presented by the Ari-zona Technology Access Pro-gram (AZ-TAP). People often assume assistive technology only refers to augmentative communication devices. How-ever, AZ-TAP runs on a grant through NAU and maintains a warehouse along with an infor-mation 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 inde-pendence and doing the things they enjoy. Therefore, they will loan or assist a youth in need with purchasing things such as adaptive cooking utensils, driv-ing aids, vision aids, or even specialty wheelchairs and com-munication 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


Report — 2008 ADE Transition Conference: Transforming Visions to Realities

By Brooke Brown

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

current events


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 copy-ing, faxing, computer work, mailing checks, etc.

GG: How long have you been working?

LF: I started work on June 2, 2008 at the Central Ari-zona Council on Develop-mental Disabilities.

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 dis-ability who wants to start to work what would it be?

LF: To go for it because if I got a job, anyone can! !

Liliana Flores, YAC-AZ Member

spotlight: employment 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 www2.nau.edu/aztap-p for more information.

As the day came to a close, I found myself trying to make sense of the Social Security Dis-ability Benefits Program. The details still re-main 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 www.socialsecurity.gov.

All in all, I left the ADE Transition Confer-ence 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 independ-ence we all desire.

(continued — ADE Transition Conference)

Interview with Liliana Flores

By George Garcia

Check out Brooke’s website and learn about her new book at http://www. wheels2wings.com/Home_Page.php.

Do you have news items to submit for our win-ter issue? Have questions or comments about SYF News? If so, please send them along to George Garcia ([email protected]).

Speaking Out — Emergency Evacua-tion Plan at ASU Needs Improving

George Garcia, SYF Youth Coordinator, and Donna Powers, AZ Statewide Independ-ent Living Council (SILC) Program Coordina-tor, spoke with Channel 5 News reporters about critical changes needed in Arizona State University’s emergency evacuation pro-tocol for wheelchair users. View the news clip which aired on September 16, 2008 at http://www.kpho.com/video/17491174/?taf=pho.

!

http://www2.nau.edu/aztap-p/

http://www.wheels2wings.com/Home_Page.php


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 Uni-versity Center of Excellence in Developmental Disabilities (UCEDD).

writer’s corner

Poem ~ Undercover By Brooke Brown


On July 9, 2008 the Admini-stration on Developmental Dis-abilities held its annual confer-ence for Youth Information, Training & Resource Centers. Representing one of the 21 new resource centers developed this year, Priscilla Perkins and I at-tended the conference for the very first time. This conference con-sisted of a two-day event held at the Ritz-Carlton in Washington, D.C.

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 travel-ing with a disability. All those who use a wheelchair gather round to hear my story.

A journey of 2000 miles al-ways begins with the first step. For me, the first step of my jour-ney began weeks before the day of my flight. To ensure that every-thing went as smoothly as possi-ble, planning was key. Once I re-served my flight, I had to make sure all accommodations were in place to ensure that I, and every-thing I own, got safely to Wash-ington, D.C. and eventually back home.

So I wouldn't forget anything, I wrote down the kind of accom-modations I would need for this

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?

The first thing I did, once I had an idea of what accommoda-tions I would need, was to call the hotel to reserve rooms for my fam-ily 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 to-gether as possible. The hotel was very helpful in providing the ac-

commodations I needed. I reserved my flight online,

but then contacted the airline to tell them that I would need ac-commodations. They asked me questions related to the type of wheelchair I use and the nature of my disability. These ques-tions 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 pro-vided wheelchair accessible shuttle service to and from the airport to the hotel. The Inter-net helped me greatly in finding which companies provided transportation. I chose a com-pany, 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 en-sure 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 assis-tance in getting off the aircraft and into my wheelchair.

Because my travel to Wash-ington, D.C. went rather smoothly, I was able to enjoy the conference. For two days, I


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

real life

My Trip to Washington, D.C. By George Garcia

— 8 —

met people from around the country who were doing their part for the disability move-ment. I attended various breakout sessions that ad-dressed areas such as identify-ing disability issues in your community and safety plan-ning for people with disabili-ties.

Although the focus of the trip was the conference, I could not miss the opportunity to see various sites around our na-tion’s capitol. Even though the city has an excellent public transportation system, I de-cided to rent a van for sightsee-ing. I visited the Washington Memorial, the United States Capitol building, and the Li-brary 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 con-ference, but more compelling is what I learned from my experi-ence in getting there – I discov-ered that traveling with a dis-ability is absolutely possible. With proper planning and proper accommodations, there should be little concern about how your disability will affect your ability to travel.

(continued — Washington, D.C. Trip)

To receive an electronic copy (PDF) of this newslet-ter, please send an email m e s s a g e t o g . g a r c i a @swifamilies.org with SYF News in the subject line.

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 / http://www.mesaartscenter.com/EventDetail.aspx

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 / http://nyra.meetup.com/51/

Oct. 8 [7pm] Rock Band Live with Panic at the Disco and Dashboard Confessional (cost: $24.75 – $34.75) Jobing.com 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 / https://www.azcentral.com/ent/eventdetails.php?id=172291

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 / http://www.azstatefair.com/state-fair/azstatefair.aspx

Nov. 1 [12pm– 2:30pm] YAC-AZ Holiday Planning Meeting (cost: free) 655 E. Southern Avenue — Tempe 602-443-0723 / http://nyra.meetup.com/51/

Nov. 29 [5pm – 9pm] APS Fantasy of Lights (cost: free) Mill Avenue — Tempe 480-921-2300 / http://www.downtowntempe.com/APS-Fantasy-of-Lights.aspx

Dec. 6 [12pm–2:30pm] YAC- AZ Holiday Party (cost: free) Venue: to be determined 602-443-0723 / http://nyra.meetup.com/51/

Dec. 6 [4:30pm–9pm] Chandler Parade of Lights (cost: free) Historic Downtown Chandler — Chandler 480-782-2735 / http://chandleraz.gov/default.aspx?pageID=164

Dec. 27 [10am–6pm] Light Rail Grand Opening Celebration (cost: free) Sycamore Station (Sycamore & Main Street) — Mesa 480-644-3332 / http://www.mesaaz.gov/lightrailgrandopening/

Dec. 31 [5pm–1am] Insight Fiesta Bowl Block Party (cost: $20 – $25) Downtown Tempe, Tempe Beach Park and Mill Avenue — Tempe 480-967-2001 / http://phoenix.about.com/cs/events/a/fiestabowl01.htm

Compiled by Liliana Flores

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SYF_NEWS_Fall2008