My name is Mark Steidl, I identify as gender non binary so I only use they them theirs. I am an out and loud gay man and I try to live my life to the fullest even though I use a wheelchair. I have my associates degree in social work foundations and I am from the fabulous city of Pittsburgh. I am on the board of Disability Rights Pennsylvania, where I serve on the policy committee. I belong to two local self-advocacy groups – Self-Advocacy Voices, which is led by self-advocates, and Empowered Voices Leadership Group at Achieva. In the past, I belonged to National Council on Independent Living Youth Caucus, Equal Access Advocacy Collective, and the CHANGE program, which was based at Childrens Hospital. I am a recent graduate of the TRAIL program, which stands for Training Regional Advocates to Impact Legislation.
In this program, I learned strategies to make systemic change. Most of the self-advocacy groups I belong to teach us to advocate for the needs of the disability community. We learn the history of disability rights, methods of advocating, sharing our personal stories, and working with legislators. I am very self confident, and I try my very best not to let anyone boss me around or underestimate my abilities. This is not easy for me to do, as I have a communication device and it takes me longer to tell people what I want. As a professional with a developmental disability, I consider myself an advocate for myself and for other people with disabilities. My disability is visible, and many people are likely to underestimate me and not see the person that I am. I have to challenge societys perception each and every day. I have to tell people when I first meet them why I use a wheelchair and communication device to talk. I have to explain cerebral palsy. People often wonder how I do school work without the use of my hands, so I have to explain that also. All of us with disabilities have abilities and accomplishments, but we have to advocate for ourselves in order to create our place in the world.
I am very fortunate to participate in the very best programs and services that our region – and even our nation, has to offer. The efforts of many dynamic leaders, innovators and activists affect my life everyday. I consider myself an advocate for myself and for other people with disabilities. My disability is visible, and many people are likely to underestimate me and not see the person that I am. I have to challenge societies perception each and every day. We young adults have to advocate for ourselves in order to create our place in the world. I do not want to be too political but much more can be done when we have the right people to lead the way. I am very concerned about possible changes to Medicaid for people with disabilities and the proposal to limit the protections of the ADA. I have marched in Washington to protest these changes and I speak with elected officials in Harrisburg and in DC.
As somebody who uses a toby DynaVox communication device, let me describe how I communicate. I use Word Power on the DynaVox Maestro Series 5 software. I use single switch block scanning at a speed of 70. Word prediction and phrase prediction are my primary means of communication. I have 5 pages of social phrases that I can get to quickly. I also independently pre-program many topical phrases in anticipation of my communication need. If the person does not wait for me to answer, the topic moves on while I continue to compose my message because non-augmented communicators keep talking. And talking. And talking. Sometimes they even ask me another question while I am typing. The end results are that they often forget the original question, and I do not always have an equal opportunity to offer ideas and establish new topics. A problem related to interruptions is guessing. people cut me off by guessing my intended message. sometimes they were right and sometimes they were wrong but, either way, interruptions are a challenge to having a real conversation. As you might imagine, a lot of the issues were due to the relative slowness of my communication as an augmented communicator who uses single switch scanning. I also needed to think more about adapting my communication methods to better fit the fast moving, more open-ended social world of college life. At that time, I estimated that people now let me finish composing my message about 15% of the time.
Now that I mainly communicate with adults in the workplace or other settings, I estimate that people wait for my messages at a higher percentage, probably around 70 percent. Within the course of a typical day on the college campus, I probably used my message, could you give me a few minutes to write something, about 40 times. By contrast, at home, I remind my parents to please wait only about 1 to 2 times per day. They have learned to wait over the years.
In summary, college life was hard. Although my academic skills translated easily, interactions were more frustrating. In college, People mingle on their own timelines. There is more freedom. For an augmented communicator, this meant I had to consciously seek out social opportunities and adapt to this new world. I find it easier now that I am out of college. People are more willing to wait for me to talk, although some brush me off. They are never doing it purposely. they have busy lives.
I am not going to get political, but we lost time that we took for granted. Time we will never get back, and that was the worst feeling, to never be able to go out besides in my van. I want people to remember that We cannot make up for lost time, but we can live our best moments right now.