During these first few weeks of my blog, you have gotten a taste of my sometimes snarky, sometimes irreverent, and always personal opinions on issues related to disability. I thought perhaps it might be a good time to take a short break from sharing my opinions and share a bit about me to give you context to those life experiences that have formed my thoughts and opinions.
I was five-years old when I was first diagnosed with an eye condition. By the time I was eight until I was 35, I had lost vision in one eye and had limited vision in the other; I was considered legally blind.
When I was growing up and going to school in the 60’s and 70’s, there were no laws protecting people with disabilities. My parents did not want me in a “special” school where, at the time, they did not feel I would receive the education they wanted for me. They also wanted me to attend the same school that my siblings did. They felt strongly that I was not to be treated any differently from my siblings, and perhaps they were dealing with their own denial about my disability. Thus, I spent my elementary and high school years attending a small parochial school where I was the only student with a disability.
But the school had no experience dealing with a student with a disability and consequently they had no guidelines or resources with which to help me. In truth, neither did my parents.
My mother and father were young and had four other young children to care for. They had to improvise in figuring out how to help me succeed in school and how to advocate for getting me what I needed. There were no rules, regulations, or guidelines; in truth, they were flying by the seat of their pants. But they persevered, despite the lack of support. It wasn’t easy and there were many missteps. But I managed to get through elementary and high school.
Socially, I did so-so most of the time, but I worked very hard to hide from my friends just how significant my vision loss was. I wanted to feel--and be- “just normal” around them. Sometimes I was able to do this. But other times, I would avoid a situation entirely if it might require me to ask for help or result in my being treated differently from my peers.
Sometimes, I was teased as I struggled to appear “normal.” But I couldn’t fake it when I required the use of magnifying glasses or large print material or I had to sit right by the teacher’s desk in order to see the board. There were of course social challenges; I didn’t trust that if my peers knew how significant my visual impairment was, or if they thought I was different from them, they wouldn’t have accepted me.
After graduating from high school, I went to our local state college where again I learned to navigate my own way. At college, I didn’t encounter other disabled people, nor did I identify with any. Today, some 40 years later, I really don’t understand how I failed to identify myself as a disabled person then. I did not feel that that label applied to me. The stigma associated with that identification was something I abhorred.
There were some behaviors and devices that might have helped me then, like using a cane at night because I was completely night blind. But I would rather have been caught naked than been seen using that tool that would brand me as blind, disabled, different. I wanted people to see and react to me, to my ideas, and opinions and not to a cane, a symbol of something I didn’t want to define me.
Fast forward a little. I graduated from college, was living in my own apartment, and was working unhappily in a nursing home. For reasons I don’t recall now, I got laid off from that nursing home job. While I was absolutely devastated at the time, that was actually the best thing that could have happened. Those were the days when we looked for jobs through the Sunday newspaper and I spent every Sunday with magnifying glass in hand looking through the job section for a job that did not require me to drive, didn’t require a lot of travel through the city and didn’t ask me to disclose that I was legally blind. In my own mind, I wasn’t disabled; I just had problems seeing—a huge difference, but one I wasn’t sure of the reaction of prospective employers. I couldn’t take a chance on being rejected because of my disability when I still did not accept that I was disabled.
One Sunday I saw the ad for a job that would--without exaggeration--change my life and my identity forever. An independent living center in Chicago was looking for a counselor with a mental health background, which I had. I didn’t even know what an independent living center was, but when I saw “disability preferred” in the ad I nearly fell off my chair. I mailed in my resume the very next morning and prayed for an interview.
This new independent living center in Chicago was called “Access
Living” and I wanted that job! So, I waited. And I prayed. And I sat by the phone (This was, of course, before cell phones!). Imagine my joy when I received that call to come for an interview!
The woman who would become my boss, friend and role model was Marca
Bristo. Several weeks and two interviews after that first interview, I was hired by Access Living as an independent living counselor and case manager. Every one of the original staff, with the exception of the staff driver, was a person with a disability. I joined the team, and in fact I felt that I had joined a movement- a movement fighting for the rights of people with disabilities.
In some ways, I was born again that day--at least in the sense of my identity. For the first time in my life, I wasn’t the different one. I was like everyone else in the office: we all had a disability! It was the able-bodied person who came in to the office or whom we encountered in a meeting who was “different.” My new status was so freeing and empowering. What an amazing sight when we went around the corner or down the street together for lunch: Our group comprised a woman who had no arms and legs who navigated in an electric chair, a woman with significant mobility impairment and such limited range of motion in her arms that she navigated her chair with her legs. We were paraplegics and quadriplegics and me, and we were all living independent, purposeful lives and contributing to society!
For the first time in my life, I felt like I truly belonged. And, as if belonging and having a great job weren’t enough, I was part of a team helping individual clients while also advocating for a more accessible world. I had a mission! I was part of a movement and now had a role in effecting change. And most importantly, I could and did embrace my identity as a disabled woman.
Soon my identity also included other roles. While I was working at Access Living, I attended graduate school, met and married my husband, and became pregnant with my first child.
After my first son was born, I wanted to be a stay-at-home mom. So I left my job at Access Living, but I had learned to be proud of who I was and what I could and had accomplished as a disabled woman. I became a leader in my community. By the time I had my second child, I was active in my kids’ schools, taking leadership positions. Comfortable with my talents and strengths, I no longer hid my disability.
When I was 35, with an 8-year-old son and a 5-year-old daughter, I lost the
remainder of my vision. Becoming completely blind changed me. That first year was rough and I had to learn new skills, I had to deal with some significant and debilitating anxiety and I needed time to adjust to a new reality. At times, it was overwhelming, but I found ways to cope. I had to.
Over the last 29 years since becoming completely blind, I have had a 3rd child, married off my two oldest children and welcomed 8 grandchildren into my life. I have taken on leadership roles, serving on the boards of multiple organizations, including as president of three of them (currently serving as board chair of Keshet. I have published two children’s books: one of them is about a young blind girl. The book illustrates for young readers all the things this girl can do, although she does them differently.
I have also learned to ride a horse, knit, and do ceramics. I’ve gone skiing, taken a hot air balloon ride, traveled, gone white water rafting and tried terminal velocity sky diving. I also speak in schools to different aged students, and organizations on disability issues. I am a member of Disability Lead.
I don’t know where I would be today if my parents had taken a different approach and put me in a school just for blind children. I don’t know where I would be if I had never gotten that job at Access Living and met Marca, Jim, Jan, Vicky, Jill and everyone else who worked there alongside me, helping our clients learn skills, find resources and learn what is possible to live their best and most independent lives. From the day I walked into that interview, my life changed. I became empowered. I embraced my identity as a disabled woman, but one with my own set of skills, talents, interests, strengths, and abilities apart from my blindness. I live a full rich life, I have a wonderful family, great friends, purpose and meaning. Assumptions about people with disabilities, stigmas and accessibility issues are my biggest challenges; I always say it is these things that disable me, not my blindness.