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2009 Summit

What Speakers Said.

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Click on the title of the talk to find out what the speakers said at the 2009 Self-Advocacy Summit.

  • Getting Connected
  • Be Safe, Be Seen
  • Rights, Responsibilities & Acceptance
  • People First
  • VRRI Client Advisory Committee
  • SRSAN - Our History, Our Future
  • My Story of Speaking Out
  • Citizenship & Getting Married
  • Getting the Ear of Government
  • From the Heart
  • Standing up for Family
  • Talking with PDD
  • Plain Language
  • It's My History, Too

Getting Connected – Chris Rowley

Chris gave out a survey. Chris said his talk would be like people helping people, not just him talking.

How do we describe disability? We must look at what people can do, not what they cannot do.

The community is everybody. You need to step out of your comfort zone and keep taking risks to get connected in the community. Keep motivated every day. Remember who you are and what you have accomplished. Motivation is the fire from within. Be careful with the words you use. Take responsibility for your actions. Become a partner with your guardian, if you have one.

What is accessing the community? Find the right supports for what you are doing. This is hard because of lack of funds and lack of staff. Agencies need to listen to you when they plan. People have a big issue with housing in the community. Cost of living keeps going up. Most people have jobs and volunteer. Listening is important for learning. Take credit for what you do. It is important for you to education the community; it is not just your staff's job. Ask staff for help if you need it.

Chris talked about the "R word." People told stories about how they dealt with the community and how the community treated them.

Be Safe, Be Seen – Central Alberta Self-Advocates (CASA)

CASA is made up of 5 self-advocacy groups in the Red Deer area. CASA made an ad that was on TV in central Alberta. It is about what you can do to stay safe when you cross the street. They were partners with the City of Red Deer on the project. For part of the project they handed out materials to the public. They talked about how to be safe and answered questions.

Rights, Responsibility and Acceptance – Rights & Learning Theatre

The Rights & Learning Theatre group from Red Deer wrote 6 plays so far based on people's lives. They performed The Bus Stop, a play with music and signing. The play talks about rights and responsibilities people have. Travel must be responsible. You have a right to education and to volunteer. But you must also follow through on what you say you will do. People must follow the rules. Voting is important. People have the right to access their money and the responsibility to spend money wisely. Everyone has a right to use public facilities and to join groups and socialize. The group had 3 audience members come up and say what rights and responsibilities people have.

People First – Kevin Layton

Kevin ran for City Alderman in Lethbridge last year. He fought for right of access without barriers for all, even if they use walkers, wheelchairs or canes. He asked people to be aware of how accessible places are. All businesses should have a red button by the door so that it opens on its own. But not all businesses have this.

People First started in Sweden in 1968. Parents created it for their children with disabilities. They still said, "We speak for them." But we can speak for ourselves. The B.C. Association for "Retarded Citizens" started in November 1973. But it still treated people with disabilities as children. People First in Oregon started to change this in 1974 and the self-advocacy movement began. They wanted to be known as people first, not "retarded." It grew from there. More and more people with disabilities could speak for themselves and be proud of it.

Kevin said that even if the word "disability" is better than "retarded," it is not good. "Disability" means "no ability." This is not true. It just means we have different ways to travel and ask. We should just be called human beings. People who are blind cannot see, but they can still read. Kevin said there is a channel for people who cannot see called "Voice Print."

Kevin talked about how People First was part of a group of people who went to the United Nations to get them to adopt a Universal Declaration of Human Rights that included people with disabilities. Then they went to Ottawa to have Canada adopt the declaration. The First Lady of Panama is a Unicef ambassador for children with disabilities and their families. The declaration says that any negative label that is hurtful cannot be used. We deserve the same treatment as everyone else.

People with disabilities can make a difference. A lot of stores in Canada used to have turnstiles at the entrance. A young lady who used a wheelchair because of a skiing accident wrote a letter to Ottawa about them. A few weeks later they started to disappear from stores.

Kevin talked about how if you do not have a physical disability that people can see, they do not think you have a "real" disability. When Kevin ran for alderman, he got weird looks. After his speech, people apologized because they had thought he was not capable because of his disability, even if they knew him for years. They realized that from the neck down, Kevin has challenges, but from the neck up, don't mess with Kevin. Even if Kevin did not get elected, he did not feel that he actually lost. Some people thought that it had been a waste of time. Kevin said, "If I give what I do 100% and I don't make it, I still know I gave it all I could. I am still a winner because I gave my best and tried my hardest." If you have a dream, go for that dream. If you do not make it, you had a lot of exercise trying. Whatever you want to do, do your best. There is one person in your life who knows what you can do and knows your hopes and dreams and all about you. That person is you.

Kevin talked about People First of Alberta. It costs $5 to be a member and another $3 for a membership card. Jim Adamchick will take down your information to become a member.

Things We Do at the VRRI Client Advisory Committee – Dennis Moynihan

The Client Advisory Committee (CAC) started at the Vocational & Rehabilitation Research Institute (VRRI) in Calgary in 1988. The group meets every third Monday. They talk about transportation, programming and issues related to people with disabilities. They write letters, march in the disability pride parade, go to rallies. Fundraise, have barbecues and speak in public. They make a difference at the VRRI. The management team asks questions and wants their opinion. They try to change policy and be a voice for clients at the VRRI. Their new project is to build a new VRRI.

(The VRRI is now called Vecova.)

Our History, Our Future - South Region Self-Advocacy Network (SRSAN)

SRSAN talk.

My Story of Speaking Out – Thomas McDonald

Thomas was diagnosed wrong so he could not get AISH. From 1994 to 1997 he struggled to get the paperwork to get on AISH. His funding from PDD was cut to 3 hours every 2 months. He needs help with grocery shopping and wants to find a community kitchen to cook with. Thomas is not afraid to ask for help.

A program named CLIP helped Thomas to put a DVD together to tell his story. He borrowed a video camera. A student used a computer to turn the video into a DVD.

Now he has been mentoring a younger gentleman named Conan. He met Conan at the independent Resource Centre at CNIB. Conan was not getting any help. Thomas gave Conan his business card. Conan called Thomas 2 years later.

Citizenship and Getting Married – Disability Action Hall

citizenship talk notes.

Brad Robertson is a Client Advocate for the Calgary Society for Persons with Disabilities (CSPD) and a member of the Premier's Council on the Status of Persons with Disabilities. He asked people to introduce themselves and talk about what they wanted to know about citizenship. Members of the audience came from Edmonton, Calgary, Red Deer, Camrose, Lacombe and St. Paul.

One staff told a story about a person with disabilities who told her she wanted to get married. As a result, the staff has continued to support people with disabilities getting married. Tammy Poirier and Murray Crosby have been supported to get married by their agency. The Board gave them beautiful roses for their engagement party. An audience member said he was engaged to be married in 2 years.

Tammy and Murray met in 2006 at the last Summit. They started to go out. Tammy called Murray a "hunk." In 2007 she lived in a group home but was unhappy there. They moved in together and later decided to marry.

There was a talk at the Disability Action Hall about the right to love. They said people who love each other should be together. Murray said he was nervous about the wedding.

Murray said he plays Santa at the Hall. Tammy talked about things she and Murray do together. They go to cheap movies and like watching sports. They both get AISH and live in low income housing in Calgary. They have been together for 3 years now and think it will last. They decided to get married at the Summit where it all began for them. They invited the audience to speak.

One person talked about a mother who said her daughter with a disability could not have a boyfriend. Presenters said that it is the mom's problem and to go ahead and find a nice gentle man. Tammy and Murray said they have not had support from everyone in their families either. If you propose and the girl agrees but the family does not, you can elope.

One person asked about what to do if your girlfriend or boyfriend breaks up with you. Sometimes a person may want to get back together, but sometimes they do not.

Some people said they do not have privacy. Staff is always around. That is a problem. Another person said if you want to live together you have to get married first. The speakers said try to work out the privacy issue with staff or find a supporter to help them with that. Some parents meddle. Sometimes you may leave parents out or find common ground with parents or staff. Sometimes you have to make changes to a guardianship order to be together.

One person asked if you could use a double date as a way to get privacy because the other couple would be focused on each other not the two of you. And another person said his mom told him that he might have to move out if they could not work things out.

One person asked how Tammy and Murray decided who would marry them. They were looking for someone who wanted to marry them—not a justice of the peace or a church. They found a friend who got qualified and then this did not cost them.

Tammy and Murray brought a teddy bear to the talk and said that it was a gift from their Maid of Honour.

They talked about how hard it is to meet people. It takes courage to go up to a person and introduce yourself. Sometimes it takes a while to get close. One person said they met at college and it took a few years to get closer. After a year of dating they became friends. Doing things together is a good way to get to know each other. You can both join a social group or cooking class. It is nice to go to the mountains together.

Getting married does not mean that you will always get along about everything. People still argue after 65 years together. But people in long term relationships live longer.

One person was afraid of losing AISH if they were with someone who was not on AISH. It is true that a person can lose some AISH if the person they marry makes money. It does not matter if you get married or just live "common law." If both people are on AISH, you will still both keep your AISH right now. You can get information on the Internet about AISH and being married.

Some people wanted to know how to find someone who was very independent like them. Some people thought it was better not to get married and to stay independent.

One person asked if the wife should change her last name or leave it the same. Tammy said she thought about putting the two names together. But she decided to change her name to Crosby. Murray was asked if he would change his name to Tammy's, but he said no because Crosby was the name he was born with. "If you can't say his last name, don't take it. It's your choice."

The group talked about how and when to tell someone you meet that you have a disability. It is important that you trust the person before you tell them. If you hook up with someone in the bar, you can't trust them. If you know that they will just say you are a "retard" then it was not meant to be. One person was afraid that she will not be liked because of her disability. One person showed a video about her disability. People asked why she did not say she had a disability before. She is now more positive about people with attention deficit disorder (ADD). People said that they sometimes avoid having a relationship because they are afraid of being hurt. They said this was based on their past experience. If a person tells you that they are cheating on you, it hurts a lot. It is important to be honest from the start.

Getting the Ear of the Government - Kent Hehr, MLA for Calgary Buffalo

Kent Hehr talked about how he became disabled when he was shot while driving. "We're not different; society is different," said Kent. "We have to educate them about what it means to be an inclusive society. If society was really inclusive, people with disabilities would be able to do everything that other people do. Here are some ways to get the ear of the government to educate them and make change happen.

  • Talk to your representative in government. When you see something that is not right or have difficulty, write a letter or call their office and make an appointment. Meeting with your representative (MP, MLA or City Council person) face-to-face has the most impact because they have to look you in the eye. Before you meet with them, know what you will talk about. Plan what to say. Then explain your issue clearly. Say what you want things to be like instead (that is, what outcome you want). Get them to tell you what they will do (action plan). Say, "How will you act on this?" Ask if you can call them back in a few months to follow-up on what they have done and what happened. Then do it. Do not call them names even if you are upset.
  • Show solidarity with marches and public meetings. If something is important to you, go out and show your support.
  • Vote. If you want something different, then vote for something different. About 60% of the people in the room did not vote in the last election. If representatives think you will not vote them out, they do not have a reason to listen to you.
  • Use petitions to educate your friends and people on the street about the issues. Sign petitions and get others to sign them. Then take them to your government representative.
  • Work on someone's election campaign so they know you and your concerns. Having a relationship with your government representative helps get them to listen to you.
  • Put yourself on the ballot. If you run for office you can talk about the issues that are important to you and get other candidates to respond.

Kent got involved in politics when he became disabled. He started by going to community meetings and deciding how he felt about the issues. Then he got more involved. Then someone he knew, Kevin Taft, asked him to run for office.

MLAs cannot wave a magic wand and solve your problem, but they can look at it and follow up with others.

Kent invited the audience to ask him questions. Kent thinks that Alberta can afford public health care. It just depends on what society values more: good health care for everyone or lower taxes. Rent and the cost of bus passes are too high for people on AISH. We have enough money in our society that no one should be homeless.

From the Heart – Sandy Layton

In 1969 when Sandy was born, Pierre Trudeau was Prime Minister and stamps cost 6¢. Sandy's family moved a lot because her father was in the navy. Sandy and her husband were both born with hydrocephalus—water on the brain. He had many shunts to reduce the pressure during his first 13 years, but Sandy did not have one until she was 14½ years old. She did not grow up with the word "self-advocacy." Her best friends were characters from books and stories she wrote. She had a security shield for protection, which went down after she got married at 18 years and got help from programs in the community.

Sandy now does a lot of things like, work at McDonalds, volunteer with the Canadian Cancer Society. She is part of the Relay for Life, Kidney Foundation, Pro-Life Board, Alberta for Life, People First, and so on. Leadership Today helped Sandy to grow, meet others, voice opinions, and have the confidence to get employment.

Sandy said to make lemonade when life gives you challenges. She said she is on her 40th gallon of lemonade.

Sandy met her husband in a mission training centre. He lived in Edmonton and she lived in Arizona. His parents encouraged them, but her parents were concerned about the distance. They e-mailed and used Facebook.

Standing up for Family – Christine Verreault

Christine's father flipped over while quad riding around the Fort McMurray area. His head was smashed, so he has no cartilage in his nose and half his face is titanium metal. But he survived. Christine encouraged her mom to let her dad go back to work even though he has only one eye now. He still drives and the doctors call him a miracle.

Christine was born with her disability but her dad is just learning how to live with his disability. Christine's mom left her job for a month-and-a-half to look after her dad and they needed to use their savings. But health comes before work. Her dad went through rehab at the Glenrose Hospital in Edmonton. Because of his disability, he now works at a desk.

A person asked Christine how the accident affected her family emotionally. She said the family thought they would lose her father. Now he wears a helmet, but he still rides a quad. The family is stronger now and supports each other. He father is still medically fragile.

Talking with PDD – Self-Advocacy Federation (SAF)

SAF talk notes.

The SAF meets every Tuesday in Edmonton. They stand up for themselves, know their rights, educate the public, and connect with allies and the community.

They made a movie together with PDD because they needed to find a better way to communicate and work together. The movie is called "How to Talk." They got together with PDD to find solutions and help understand each other. They both wanted to improve the services individuals get. They wanted to stop focusing on the wrong or bad things and start looking at the strengths. People do not want to lose their independence or their homes.

Good rules for Communication from "How to Talk"

  • Make it meaningful. No big words.
  • Listen to what we say and our stories. – Tell me if you do not understand. Do not rush me. Keep an open mind.
  • Come back to us to make sure you understood what we told you. – Tell us what you can and cannot do. Tell us what you learned. Do not skip over the bad. Do not beat around the bush. Respect us and use language we can understand.

People can buy a copy of the movie from SAF. Or you can watch it online at Vimeo.

Plain Language – CASA Plain Language Society

plain language talk notes.

CASA is the Central Alberta Self-Advocates. They are a non-profit group with 11 members who want to include everyone in society. Plain language is a clear way of speaking and writing. Pictures are added to papers to help. The group looks over documents. If there are long words or words members do not understand, they translate them into smaller or shorter words. Their mission is to translate documents, letters and so on to make it easier for everything.

The group has done work for PDD, the City of Red Deer, Volunteer Red Deer, Artspark, CAIWA and several agencies. They have translated business papers, bank statements, medical forms, utility bills and other papers, but not legal documents. They have translated many government documents, such as the PDD board minutes and agenda, the PDD business plan, and the Red Deer brochure.

Lots of people use plain language: senior citizens, people with disabilities, newcomers to Canada, people with low reading skills or vision problems or brain injuries. People who are too busy to read lots of information also need plain language.

The group do their translation at

CIRS - #105, 4728 Rose Street, Red Deer, AB T4N 1X2

Their website is www.casapls.ca

It's My History, Too! - Annalea Sordi

It's My History, Too talk notes.
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