Tag: Advocacy

Advocacy: Making your Voice Heard!

Why is advocacy important?

Photographer: Joe Gratz

We vote our elected officials into office to write our laws. But many people feel too nervous to approach their politicians.  They may feel like they won’t be listened to or that they don’t have anything important to say. This is not true!If something is important to you, it is probably important to many others as well. Everyone’s voice should be heard.

But I don’t have the time!

As a mother of children with special needs, I know how hard it is to find time to get involved. Leaders want to hear the personal stories behind the numbers.They want to see pictures of people impacted by laws. If you are reading this blog, you can email your legislator your story and become part of a change for the better.

Where do I start?

If you don’t know who your state legislators are, then a great place to start is the Massachusetts State Legislature website. On the web site, there is a text box in the upper right hand corner. It asks you for your zip code. You type in your zip code and the web site will bring up information for your legislators. From there, you can choose to call, email or write your legislators depending on how much time you have and what your comfort level is. What is important is that you communicate your needs, thoughts and concerns with lawmakers. Your voice and your ideas could be what changes people’s lives for the better. You can be the change for the better.

For more information, you can also visit:

On Us

Many meetings about disabled people do not include them. Disabled people have been left on usout of many talks and decisions. They can be about little things, like their daily lives. They can be about big things, like national rules about disabled people.

In the 1990s, however, an old term was translated into English. It quickly became the motto of the worldwide disability rights movement. In five words, it says exactly what disabled people want and how they want it.

“Nothing About Us Without Us”

In other words: do not talk about us without including us.
Do not make laws about us without asking what we think. Do not say something is wheelchair-accessible without talking to wheelchair users. Do not talk above us at meetings. Do not have panels of experts on autism without an autistic person. Do not make clothes for people with cerebral palsy without having people with cerebral palsy test them. Do not write books about blindness without blind people.

For most of history, disabled people have been seen as less than non-disabled people. People were locked up in places called institutions. They were often little better or a lot worse than jails. Many non-disabled people think disabled people need to be taken care of. They think disabled people cannot take charge, and make changes in their lives, or in the lives of other disabled people.

We disabled people know that is simply not true. We have a lot to say. To get our points across, we talk with:

  • sign language
  • speech devices
  • writing, and more

Today, the slogan “Nothing About Us Without Us” is the title to a popular book by James Charlton. It is about how disabled people are running their own lives. It’s about how they are changing the world. It is also the slogan of groups like the Autistic Self Advocacy Network. It was the theme of the United Nations International Day of the Disabled Person in 2003. It has even moved beyond the disability world. It has been used by other groups who are not treated well by others.

“Nothing About Us without Us” is a simple phrase. Yet it is very important. It tells everyone that disabled people want our voices to be heard. We want our thoughts to matter, because they do.

Growth of Queerability Shows Importance of Including LGBTQ Voices In Disability Advocacy

 person in a wheelchair with rainbow background
Queerability logo

If you’re an active social media user and a disability advocate, you may have noticed a rainbow adorned wheel chair logo in your news feed. If you haven’t, the organization behind that logo is something you should know about. Founded by Kristen Guin, Queerability seeks to extend the voice of individuals with disabilities who identify as LGBTQ. Broadening the visibility of this community demonstrates its validity within the global mainstream and dismantles harmful misconceptions.

Queerability currently has a presence on Facebook, Twitter and Tumblr, but it doesn’t stop there. The organization has recently announced its plans to achieve non-profit status. The founder of Queerability, Kristen Guin, explained that the journey to this point wasn’t easy. “It took me a couple of months to decide to start Queerability” said Guin during an interview on Monday.  Her reluctance stemmed from her belief that she wasn’t qualified. “At the time, I didn’t know much about other disabilities aside autism, and I didn’t feel educated about other LGBTQ issues” Guin said. My talk with Guin, who identifies as autistic and bisexual, revealed that she possesses the characteristics to become a preeminent leader. Her humility, humor, dedication, and intellectual prowess demonstrate that not all ‘Millennials’ fit popular stereotypes. In addition to running Queerability, Guin attends Western Kentucky University where she studies Business Management.

Amongst the recent accomplishments of the organization that, according to Guin, “seeks to increase the visibility of LGBTQ people with disabilities by honoring the intersection and parallels of the LGBTQ and disability experience” include influencing the actions of President Obama. Queerability co-signed a letter with the Autistic Self Advocacy Network to the president and Labor Secretary Tom Perez urging them to include workers with disabilities in the executive order to raise minimum wage. The president listened. View an electronic copy of the letter.

“Living my Childhood Dream”, by Tracy Thresher

Tracy Thresher Vote HereTracy Thresher lives and works in Vermont as an advocate for people with disabilities. He has written:

“As a child, I struggled with no reliable way to communicate. I now live out my dream of traveling to other states to educate others on movement and communication differences. Primarily, I advocate to promote the Presumption of Competence. “ (Blog Post, October 30, 2012)

This week we are pleased to share the transcript of an interview with Tracy that was recently published in Autism Around the Globe .

I am Tracy Thresher from Barre, Vermont. I now live part of my childhood dream thanks to the support of facilitated communication. Master trainer, Harvey Lavoy, has been my primo facilitator since the early 90s. Harvey, master trainer Pascal Cheng and my pal, Larry Bissonnette, and I have presented to educate others for many moons. Since the release of “Wretches & Jabberers”, Gerry Wurzburg’s documentary about our lives and work, our travel calendar has been wonderfully and fantastically full of opportunities to promote the presumption of competence. Please read
my blog  to follow along on my journey.

Below is a transcript from my interview with the NLM Family Foundation featured in a video montage created by the Foundation titled, “In Their Own Words: Living with Autism in Adulthood.” I have had mind blowing professional growth thanks to communication. Communication opens the door to opportunity.

What are your hopes and aspirations for creating the adult life you desire?

My hopes are like a beautiful tapestry which I need to find the perfect combination of support to make into my own magic carpet. My wish is to create the life I see in my head on the mountaintop of my Green Mountains. To be true to the Tracy on the inside, I need to have people in the mindset of peaceful open-mindedness.

It is my desire to be independent to the best of my ability. I communicate more slowly than I wish to in this high-paced world but my thoughts are very quick. The touch of my facilitator must be one of peaceful calm. To build my dream of becoming an educator I pushed through many barriers of built up walls of enclosing people in institutions or encasing them in the trap of no outlet for their inner thoughts. It is more harmful to my soul to be in this stubborn body than I can type. To hope is to have faith in a future that includes professional growth and not the antiquated roles of paper shredding or stocking shelves but being respected for the knowledge this life has taught me.

My priority is to own or rent my own home or place with a good supportive roommate who is willing to be open to going through intensive training to get to see how my spirit relaxes with communication. I am not the person I appear to be upon a passing glance. To get to be the man I aspire to be is a lifelong journey. It is my vision quest to find more peace in my life. I think having my own home is the next step on my ladder of communication, as it is what I must have to be free of the encumbrances of others.

What are the specific challenges that you believe you face or will face in your adult life (housing, companions who assist you, living in communities, relationships, employment, education, etc.)?

As I mentioned, my priority is housing or more difficult to find is a companion to be my assistant in the life of becoming more independent. The hardest part is envisioning what I need but being unable to find the perfect combination of nice and firm communication partner. The world moves quickly and I need open-minded people who slow down to listen to my typing.

To live in the friendly Central Vermont community is a blessing. We have educated many people in our community by joining forces in schools. We have also spoken to legislators to let them see our intelligence. Our social fabric is beautifully sprinkled with an eclectic mix of abilities. There is more to be done and my fellow self-advocates and our supporters are tirelessly trudging up the trail to higher thinking. Through my work I have met many wonderful people who enrich my life and feed my soul to the point I dreamt of as a lonely boy.

My family loved me to the max; however, life in school absolutely traumatized me. It became unbearable to be thought of as a child who could not be educated. Now I mentor students. It is my mission to inspire children and show neurotypical kids how to slow down to listen to typing. More importantly, how to be a friend is what kids need to learn. I am thinking friendship is the way to open pathways to learning. On the mountaintop of success people need to have a hand to pull each other up.

On the top of my bucket list is to continue to learn and teach. I graduated from the school of hard knocks; now I try to prevent other children from living through the pain of a life of misunderstanding. I have friends who have made me proud by pursuing higher formal education. I would say my education continues through my work on the circuit of presenting to schools and communities. My employment is one of typing to educate. Working on presentations is on my mind constantly. I write it on my brain, and then I need my facilitator to be at my side to push the words out. To come from a menial job to a professional career is my proudest moment.

What types of programs or services would enable you to achieve the adult life that you envision and/or desire?

It is my desire to, of course, be as independent as my abilities allow. I want the same for all people. The Vermont legislature is better at listening to my typing than most other states. I understand politics and the need to divide services as fairly as possible. Ideally, I would like my services to include funding that is more reflective of the housing costs necessary to put me on the path to independence. The primary obstacle in my experience though is training of facilitators.

Harvey Lavoy, Pascal Cheng, Larry Bissonnette and I work hard to cover the state of Vermont on our shoestring budget but it is tough to get to everyone we would like to. For Harvey, it is a juggling of priorities that need to be addressed. My mission in life is to have the home of peaceful independence to communicate in daily life across environments. More than anything, I want to create a world of communication for all, to have our voices heard loudly from the hills.

Tracy Thresher
Self-Advocate, Activist, and Documentary Film Star