What are you up to these days? What projects are you involved in?I find myself again in a state of transition but this one doesn’t have any toolkits or webinars. From the age of 18 to around age 30 I was still considered a “youth” and found much of my identity in peer support, working with other youth in supporting them during the transition into adulthood. What I believe was so successful about that work was the near peer mentoring, other young adults in leadership roles which allowed them to mentor youth slightly younger or less experienced than them. I knew how much it had personally changed my life and wanted to replicate similar programs for others. Those programs that I started during my 20s are still active and successful, although slightly different than when I created them. As an “adult” I felt that these programs would only be successful if youth continued to run them and that my original concepts for these programs could potentially keep them from growing and changing with the needs of society and today’s youth, so I handed them off to other young leaders. Although I still miss that mentoring and program development, I have realized that my experience will allow me to help others develop similar programs. Pennsylvania was extremely progressive in youth leadership but many states have not caught up. Through my current position as the co-director of RAISE, I am able to work with other states on developing their own youth leadership programs. In addition to this transition in utilizing my passion and expertise, I am continuing to define what it means to be an “adult” with a disability. By going straight through my education from preschool through doctorate, I was able to prolong my “youthhood” until I was 30. Even though I had my own apartments and jobs, much of my identity was still in activities that were for young adults. Now, I am done with school, I have my own business, a house, and a husband. I’m still not sure exactly what that means for me and if I’m doing it right. What does it mean to be a wife with nearly no physical ability and 24-hour care? Is adopting even a viable option? How would I care for a child? These are all questions I continue to wrestle with on a daily basis.
Where do you see yourself in five years? Ten?Since my business works on contracts I am not sure what jobs I will have at that time. I am hoping to develop new youth development materials, potentially through vocational rehabilitation that can be implemented in Lawrence County and more rural regions. On a personal level, I hope to be able to build a house that is fully accessible to me. My husband and I are also looking at either fostering kids or adoption. Professionally, I would love to continue working on legislation and public policy. I love all of my jobs but that is an area that I hope to continue to learn and grow in.
What makes you happiest in life?I love to problem solve and brainstorm. As an individual with a disability, I think that this task is vital for survival. From learning how to change wardrobe between scenes in my high school play to figure out how to not lose my ventilator while skiing down a mountain in South Dakota, my life has relied on problem-solving. I love to be able to look at situations, policies, and programs to figure out what makes things better.
How do you feel about having a disability? Is it a strength or a weakness? How about both?There is innate power in being a woman with a disability. Whether we want it or not, we are seen and heard but it is our choice on how we use that platform. Of course, there are those moments where everyone wants to blend in (like those late night shopping trips to Walmart in your pajamas) but for those of us with obvious disabilities “blending in” is often not possible. For me, having a continuous platform has allowed me to teach others about diversity, assuming competence, and the important role that individuals with disabilities play in the world. By having a disability, I am forced to face the barriers created by injustice every day. In order for me to lead a self-determined, fulfilling life it is impossible for me to not fight for equality. Apathy is not an option. There are days that having a disability with a lack of necessary supports or facing discrimination is absolutely exhausting. But it is during those times that I must remind myself that it is not the disability that is the barrier, it is the lack of support and the presence of injustice that causes my exhaustion. It is the moments when I call restaurants to ask if it is accessible to then show up to find out that they consider “only one step” to be wheelchair accessible or when I go to the doctor and they asked the individual beside me to fill out my paperwork (even though I don’t know them), when I need those reminders. Through resiliency, perseverance, and faith weaknesses can become strengths. It is through these moments of mental exhaustion that I am reminded of what others face on a daily basis. It rejuvenates my passion and reminds me why I am doing what I do.
How have you overcome your most difficult obstacles?The two main barriers that come to mind are myself / my false perception of disability and society/governments understanding of disability and success. My misconception of disability prevented me from pursuing my maximum potential for most of my life. Living life and meeting others with disabilities change this false perception for me. In the United States, disability governmental benefits as an adult often depends on your ability to work, earn an income, or have saved money. The benefit system does not take into account the advancements in technology and medical technology that has allowed individuals with disabilities to survive and be successful in careers while continuing to require ongoing expensive medical/home and community-based services. If we are able to earn money than we are at risk of losing life-sustaining services. This was one reason that I establish my business, so I could control my income. This is also why I am married by the church but not by the state. Although I earn over $20,000 a year it is not nearly enough to cover the $250,000 of care that I require each year. My business allows me to regulate my salary so that I can continue to receive medical assistance and I am currently working on state policy that can allow individuals with disabilities to continue to receive medical assistance while earning a livable income.
Have accommodations assisted you over the years or has it been an uphill battle to find resources?A significant amount of my supports are provided directly by other individuals. Because I require 24-hour care I am able to get support in almost all activities of daily living. Slowly, technology is improving allowing, individuals like myself to use it to be more independent. Instead of relying on individuals to type, turn lights on and off, locked the door, change the thermostat, or look outside I am able to use technology and do it on my own. These smart home devices are being developed for the general population and are therefore less expensive than disability specific technology.
How has having a disability impacted your relationships? Do you find it a significant part of the communication of needs?How has it not affected my relationships? A majority of my friends and my husband are individuals that I have met because they are individuals with disabilities or work with individuals with disabilities. Throughout college, a majority of my friends were individuals that I hired to be personal care attendants and throughout my jobs my friends have consisted of individuals who have disabilities. My disability influences the activities we can do, times that we can meet, locations that we can go to due to accessibility, the strange interactions I have with other people, and thus our conversations. Until college, I tried to separate friends from individuals who provided disability accommodations. I didn’t want my friends to think of me as a “burden” because they had to help me. Since I had to hire peers in college to provide my care I overcame that concern and realize that things are much easier when we all help each other.
Describe yourself in three words and explain why you chose those words..
- Persistent- the word “no” has never been in my vocabulary. Whether it was dealing with my own physical limitations, bureaucratic barriers, or problem-solving the word no is not good enough. My persistence allowed me to find ways to accomplish my goals or change the system.
- Resilient- I repeatedly run into obstacles that set me back a few steps. Sometimes it involves insurance, change in medical equipment, changes in my health, etc. I have learned that although they are extremely frustrating and time-consuming, these barriers have allowed me to learn and grow. They have additionally allowed me to help others who may have not face the barrier got that are bound to.
- Passionate- when I get involved in an issue, I jump in with my whole heart. I find true joy when I am working on projects that will empower others. This passion is my life power.