The Power of Our VoicesCNY Self-Advocates Speaking Out Volume 1 Issue 1

800 S. Wilbur Avenue, Syracuse, NY 13204 (315) 473-5080

The Power of Our Voices, formerly The Voice of Freedom, is a newsletter by and for self-advocates in the Central New York Region. We encourage contributions to the newsletter. Let us know if you have a suggestion, would like to write an article, or have ideas to make it better. Contact us at (315) 473-5080. The Power of Our Voices will be published four times a year (July, October, January, April). Opinions expressed in

The Power of Our Voices represent the views of the authors. The Power of Our Voices is supported by the Self-Advocacy Association of NYS and the Center on Human Policy

through a subcontract with the RTC on Community Living and Employment at the University of Minnesota.

The Voice of Freedom is now

THE POWER OF OUR VOICES!

The Power of Our Voices

Editorial Board

Mario Alexander Jennifer Borrowman Anna Carroll Cyndy Colavita Tina Fitzgerald Dan Flanigan, Regional Coordinator (SANYS)

Kayla McKeon Nicole Spear, Regional Organizer (SANYS)

Rachael Zubal-Ruggieri, Graphic Designer

What’s Inside

My Life Story by Anna Carroll

Highlights of the 24TH Annual Central Region Self-Advocacy

Conference

Spread the Word to End the Word CNY Events

OMRDD Name Change Update: Message from Commissioner

Diana Ritter

Meet your new CNY SANYS Regional Board Representative

Chris Paronis

Sound Off–For self-advocates to talk about

whatever they want

Calendar of Events

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provided. Now I help all of my friends participate in this event to raise money for the cause. I work at the Hancock Air

Force Base cleaning six of their buildings. I also work at Monarch Industries in the woodshop where I cut, clean, and do many things with wood. I had donated some wood for an awareness event to spread the word to end the offensive use of the r-word at Syracuse University this year. I felt it was well worth it. I enjoy my co-workers. They are like my family. I have a learning disability so work isn’t always easy but I have great supports to learn how to do my job the right way. My case manager also helps me at work to see how I’m doing, and how well I’m doing my job. My service coordinator meets

with me at least once a month to talk about what’s on my mind. This is important to me because I know she cares about me. I live in a state-run group

home that I like. I have staff that drives me to work and other places in the community. They also help me schedule and attend my SA events. At this year’s SA conference I was blown out of my mind when I received the Most Improved SA of the Year Award for demonstrating leadership with helping others. For all my readers, if you’re interested in Self-Advocacy, do it and you’ll be glad you did! Self-Advocacy to me

means having moral support from others and talking for myself.

Written by Anna Carroll With supports from Kayla

McKeon & Nicole Spear

My Life Story by Anna Carroll

I just turned 50 years old, and have been a self-advocate of the greater Syracuse area for 2 years now. I love every bit of it, and have learned to be very articulate. I am proud to be a self-advocate, and love attending SA events. Special Olympics is

important to me too! I’ve been involved with Special Olympics for many years playing sports such as floor hockey, bowling, softball, track, and field. I used to play basketball. I’ve done the Down Syndrome Buddy Walk for 3 years and love doing it because it makes me feel good. Every year I attend this event with my good friend Kayla and her family, and I really like them for the support and guidance they have

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This year’s conference was held at Carnegie Convention Center at Driver’s Village, and everyone was very pleased with the new location. The food was great. There were more rooms available for break out sessions, and they were spacious enough for everyone. The Convention staff at Carnegie was superb, timely, charming, and accommodating. We look forward to having our conferences at Carnegie in the future! The keynote presentation

given by Erin & John Henderson was inspiring. They spoke about their lives before they got married, their marriage, and what self-advocacy meant to them. Erin and John also spoke on how their support staff were supportive of their choices, and over time those staff became more like family. Then we previewed the

new “We Have Choices” video produced and

directed by Jerry Smith, funded by OMRDD, in partnership with the Self-Advocacy Association of NYS. This video is a documentary based on eight individuals who made the move from agency-based services to community based individualized services. Self-Advocates and support staff were touched by these stories. There were eight

workshops throughout the day. Topics included individual choices, being in control of your services, support staff recognition, the R-word campaign, and relieving stress in our lives. Five strong candidates

ran for the CNY SANYS Northern Board Position at our conference. This year we gave out SA

Awards. The winners were: Brad Roggie, SA of the Year

Glenn Fealy, Direct Support Professional of the Year

The Self-Advocacy Network & People Are Beautiful, SA groups of the Year

Anna Carroll, Most Improved SA of the Year

Fayetteville-Manlius High School, Community Support Award

Gary Burkle, Lifetime Achievement Award

It was great to see self-advocates from all over the region attend our conference. We enjoy getting together, and learning about self-advocacy. We would like to send a

special thanks to Dennis Pullen for his painting demonstration and generous donation of art to raise money for Self-Advocates to attend conferences in the future. Pictures of the conference

are included on the next page. Hope to see you all next

year and have a great summer!

Highlights from 2010 SA Regional Conference

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Pictures of the 2010 SA Regional Conference

Kris & Paul DeForge Scharoun Conference Participants

Gary Burkle received the Lifetime Achievement

Award

Keynote Speakers John & Erin Henderson

Members of the Utica Self-Advocacy group

(USA)

Mistress of Ceremonies Kayla McKeon with

Dennis Pullen

SA Groups of the Year People are Beautiful (Herkimer) Self-Advocacy Network (Syracuse)

David Liscomb SANYS Board President and Steve Holmes introducing the new video

“We Have Choices”

The Power of Our Voices 5

events in communities across the country. As part of this nationwide effort six members of the Self-Advocacy Council of Oswego County, a group of individuals with disabilities who work on advocacy issues to make our community more inclusive for all, had a display in the Student Center at SUNY Oswego. They handed out 60 stickers, over 50 bookmarks and about 100 information sheets to bring awareness to the students,

our future leaders, and faculty about the importance to use language which communicates respect. Students were asked to refrain from using the r-word and to go to the website www.r-word.org and make a pledge to use language which communicates respect. The word retarded,

especially when used as a put down, robs people with developmental disabilities of their dignity. People with developmental disabilities are friends to all, they are siblings, parents, athletes, children, classmates, co-workers and mentors. Spread the word to end the word wants everyone to use the new “r” word which is respect. Think before you speak and replace put downs with respect. The movement is asking for your help in creating a more accepting world for people with intellectual and developmental disabilities

ARISE Advocates “Spread the Word to

End the R-Word”

“Spread the Word to End the R-Word” is an ongoing effort to raise the consciousness of society about the dehumanizing and hurtful effects of the word “retard(ed)” and encourage people to pledge to stop using the r-word. On March 3, organizations

and groups held various

Spread the Word to End the Word CNY Events

In the back row are Sherrie Griffin and Billie Griffin. In the front row are Gordon Gaebel, Sarah Skillen, and Jim Cronk.

The Power of Our Voices 6

disabilities.” Sarah is married to Ken and also attended the event. Anyone who wants to join

the Self-Advocacy Council, which meets monthly at ARISE, 9 Fourth Avenue in Oswego or to get more information may call Ken Skillen at ARISE at 342-4088 ext. 226.

HERKIMER Self-advocates from HARC were stationed at the McLaughlin Center at Herkimer County Community College passing out fact sheets to HCCC students asking them to take the pledge to stop the use of the r-word.

WATERTOWN

and all those people that may appear different, but have unique gifts and talents to share with the world.

“We can all work together to accomplish this and to end the use of the word retard(ed),” said Ken Skillen, who is the president of the Self-Advocacy Council which meets at ARISE. He found the students very receptive. Sarah Skillen added : “It hurts. We need to work toward a real change of attitudes now and reverse the stigma that is so destructive to the lives of people with intellectual

Billie Griffin (left) and Sarah Skillen (middle) are happy to have someone walking by (on the right) sign a pledge to end the offensive use of the “r” word.

John D. Leo, group adviser, stands with North Country Self Advocates members, from left, Elizabeth R. Scott, Samuel C. Porter and Nancy A. Murphy. The group is on a mission to stop the use of any version of the word 'retarded.'

The Power of Our Voices 7

seemed concerned about those with disabilities. I feel that we got the public’s attention today. Disability Day is in honor of those who want respect for who we are and for fairness in our lives.

SYRACUSE UNIVERSITY

CAMPUS

Disability Day By Jennifer Borrowman On March 3, 2010 at the

Syracuse University campus, there was a walk for “Disability Day.” Volunteers from all over Central New York came to pass out flyers and answer questions. The walk began at 10:00 am and ended at 2:30 pm. It was a fun, full day! Questions were answered and over 2,000 flyers were handed out. People came from Auburn, Watertown, and Utica. What a great day! All the people listened and

The Power of Our Voices 8

To show our gratitude for their extreme passion and hard work they were presented the 2010 Community Service Award at Regional SA Conference held on May 22nd.

F-M Awareness Day Students from

Fayetteville-Manlius High School, lead by junior Christina O’Connor and Colleen Mangan, Teacher & Advisor, organized the Beyond Disabilities assemblies at F-M on March 31st which stressed the importance of avoiding hurtful words. The group held three optional assemblies which attracted more than 3,000 students, teachers and community members. Speakers from

AmeriCorps Matt Akin, Rachael Romer and Rick Fitzgerald opened the assembly with their personal stories and the event ended by with asking the F-M community to sign pledge cards & participate in the shredding of hurtful words. Self-Advocacy Network

Members Chris Paronis, Dan Smith and Kevin Cobb assisted in various ways during the event. A month before the event

students sold over 300 Label Jars Not People T-Shirts to help spread awareness and promote the event!

F-M Shredder eats “disrespectful” words

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emails, letters to the editor and conversations that you had with legislators. All of this made the difference! I am looking forward to

making a more formal announcement of our new name in the very near future! Stay tuned and thank you so much for your partnership!

Sincerely,

Diana

Diana Jones Ritter Commissioner

OMRDD

OPWDD

OMRDD Name Change Update: Message

from Commissioner Diana Ritter

When we met back in March, we knew that we were making history. Now it is official! The Assembly and Senate have both passed the name change bill. When Governor Paterson signs it, OMRDD will become the New York State Office For People With Developmental Disabilities (OPWDD)! This historic legislation also removes the words “Mental Retardation” from State statute and regulations. This is the culmination of

our partnership and all the work you have done to advocate for the respect and dignity of people with developmental disabilities. Thank you for the memos of support, phone calls,

The name change bill has passed both the Assembly and the Senate. Now we are awaiting the Governor’s signature. We want to thank you all for your efforts with phone calls and letter writing. Together we made it happen and very soon we can say “I receive services from the NYS Office for People With Developmental Disabilities (OPWDD).”

—Tina Fitzgerald

THANK YOU Sara Skillen for serving as our SANYS Regional Board Representative--a job well done!! Sarah Skillen (right) with

her husband Ken

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JULY, 2010 AUGUST, 2010 SEPTEMBER, 2010 July 12th

Self-Advocacy Learning & Training (SALT) Session:

“What is the ADA” July 19th

SALT Session:“How Does the ADA Effect Me?”

August 2nd SALT Session:

“Rights & Responsibilities: The ADA”

SALT Sessions (Most Mondays):

Topic scheduled for September: “Diversity of

Disabilities”

July 22nd Summer Fun! Hawaiian Night Dinner Dance

sponsored by Rome SA Group Speak It!, 7-9 pm @ Delta Acres Day Hab. For more information call

Debra Sprock @ 315-336-2300 x551

August 9th

SALT Session: “Rights & Responsibilities:

Section 504”

September 23-26th SABE National Conference

August 16th SALT Session: “Rights & Responsibilities: IDEA”

August 30th “Rights & Responsibilities:

P.L. 94-142”

September 26th Buddy Walk, 11:00 am @

Longbranch Park

July 26th ADA March 9:15-11:30

For more information or accommodations call Sally Johnston @ 315-410-3317

August 23rd SA Regional Picnic 10:00 am-3:00pm

Willow Bay (Onondaga Lake Park)

Events are subject to change.

Would you like to post an event?

Contact us @ 473-5080

August 28th

SA Dinner Dance 5:00-10:00 pm Drivers Village

OCTOBER, 2010: October 28-31st

SANYS State Conference @ The Albany Marriott

October is also Disability History Month!

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Meet your new CNY SANYS Regional Board

Representative Chris Paronis

My name is Chris Paronis. I live here locally in Syracuse and am a member and the secretary of the Self-Advocacy Network. I am so very happy to have been elected as your CNY Regional SANYS Board representative. I love being a self-

advocate and teaching others about self-advocacy. I am a current member of Disabled in Action. I have a passion for

learning new things and understanding current events—both the bad and the good.

Some of the issues I think will be important to advocate for as your Board Representative are Medicare, Medicaid, Transportation, HealthCare Reform, Social Security, independent living and employment. I have been very involved with the local “R” word awareness events and as your representative I have contacted my local legislators to ask for their support on the OMRDD name change. I have committed my life

to empowering myself and others. I look forward to being on the board, and I hope to be the best advocate I can possibly be to make our lives better.

Chris Paronis (left), with Samantha LaRocque, President of the SA Network

The Self-Advocacy

Network invites you to

attend their Annual

Dinner Dance,

Saturday, August 28th

from 5-10pm @

Driver’s Village. Music

provided by Rock A

Rolla DJ Services.

Invitation will be

mailed soon! For more

information call 443-

3851.

Self-Advocacy

Learning & Training (SALT)

Want to learn more about Self-Advocacy? Every month features a different SA topic for discussion. When : Every Monday (the

DSO offices are open) 10:30am-12pm Where: Information

Station, 800 S Wilbur Ave Suite 3A1, Syracuse, NY 13204 Who Should Attend: Any

self-advocate, professional, staff, or individual interested in learning more For more info call Tina

Fitzgerald @ 315-473-3133

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Kenny Deans did on a radio show called Beating the Streets of Central New York on 93Q Club. They used to come on 6pm to 12am. I have a friend of mine

the late great Becky McKee. She used to come on 1260 WNDR from 6am-10am. The kind of music she played as gospel music for 2 hours and 2 hours of regular music. She used to give away records, and the name of the record place is Sound Shack. The guy that works

at the record place was James Cole. I think they should have

a radio station that plays the old love songs. I think they should have Black Radio Love Songs. If it wasn’t for Skip

Harrison, we would not have Black radio today.

Sound Off A place for self-advocates to talk about whatever they

want

Mario Alexander I’m would like to share a

few comments and the history of Skip Harrison and history of Black Radio in Central New York. Skip got 360 Ebony Degrees started and played the music of Steve Wonder and Gladys Knight & the Pips.

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PAID Syracuse University

Syracuse NY

Syracuse University The Power of Our Voices 805 S Crouse Ave Syracuse, NY 13244-2280