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Your Leadership and Disability are Intertwined

Karen Tamley
April 17, 2020

I still clearly remember feeling terrified on that early September morning when my mom put me on that empty yellow school bus. The bus had backed down the long driveway to my house to pick me up for the first day of preschool. As the bus drove up the hill, away from my house, I sat in my rear-facing booster seat with tears streaming down my cheeks, crying out for my mom as she grew smaller and smaller in the distance.

That first day of school would not have been so traumatic nor seared into my memory if my mom had been able to take me herself to the preschool just down the hill from our house to personally ensure I was safe in my new classroom.

But that was not possible. I had a disability, and it was the year 1970, which meant I had to be sent 15 miles away to Marindale, a segregated school. My neighborhood school would not accept me due to the needs my disability required, and there were no federal laws at that time to reverse this injustice.

Marindale School in front of a grassy knoll on a sunny day.
Marindale School

In 1975, when I was in the third grade, I was called to a meeting at my school with my principal, my teachers, my mom, and other school administrators. Sitting at the long, formal, walnut table in the conference room next to my principal’s office, I was told I would soon be leaving Marindale to attend the school in my neighborhood — Wade Thomas Elementary. I was so excited that I’d finally be able to go to the same school as my younger sister, my friends from Camp Fire Girls, and the kids from my neighborhood

This move was a result of Public Law 94–142 — the Education for All Handicapped Children Act — a brand new federal law that required federally-funded schools to ensure equal access for children with disabilities. This law was later amended in 1990 to what we now refer to as IDEA — the Individuals with Disabilities Education Act. Public Law 94–142 called for 4 key things:

  • To ensure that special education services are available to children who need them.
  • To guarantee that decisions about services to students with disabilities are fair and appropriate.
  • To establish specific management and auditing requirements for special education.
  • To provide federal funds to help the states educate students with disabilities.
A torn page excerpt from Public Law 94–142. "An Act: To amend the education of the handicapped act to provide educational assistance to all handicapped children, and for other purposes."
Public Law 94-142 Excerpt

Changing schools was significant on my trajectory to becoming a disability rights advocate. At Wade Thomas Elementary, I began my inclusive and integrated educational life. I finished grammar school, then middle school, high school, and, finally, a top university. While I was often the only kid with a disability at school — or one of very few in sight — I thrived academically and socially. However, the world outside of school was still inaccessible and unwelcoming.

While Public Law 94–142 enforced inclusion at my school, there were no laws enforcing curb cuts that’d allow me to cross a street myself, no laws mandating lifts on buses so I could go downtown with my friends, no laws requiring accessibility in restaurants so I could go with my family to their favorite restaurants without relying on my parents to carry me up the steps or having to get out of my wheelchair and crawl on the bathroom floor to access an inaccessible bathroom stall.

In January of 1990, I moved away from my home state of California to Washington, D.C., where I had taken an internship with a disability rights attorney. In his tiny office, my boss taught me the fundamentals of the disability rights movement — the policies, the issues, the appropriate language to use, and the barriers other people with disabilities faced. I was sent to disability rights conferences and protests where I met some of our movement’s most well-known leaders.

A group of 9 adults of various abilities and races smile for the camera. Behind them is a large projector screen with the words, "Judy Heumann: civil rights, leadership, and disability."
Karen, lower right, poses with eight other people, including Judy Heumann and Marca Bristo.

But most significantly, I was given the honor of attending the signing ceremony for the American with Disabilities Act on the White House lawn in July of 1990. Little did I know, sitting among a crowd of hundreds of others on that hot summer day, that the stroke of President George H.W.’s pen would fundamentally change my life, as well as the lives of millions of people with disabilities.

Fast forward 30 years: I am married with an adopted 14-year-old daughter with multiple physical and learning disabilities. I realize now how much things have changed in my lifetime. Today, I can ride the bus in any city in the United States, cross a street independently thanks to nation-wide curb cuts, choose where I shop and eat because of accessible alternatives to stairs, and I can rest easy knowing I’ll never have to watch my daughter be bussed off to a segregated school.

Karen: center, smiling in a green top. To her left: a teenage girl in a cardigan. To her right: a young woman in a blazer.
Karen poses with her daughter (left) and Disability Lead Member Rachel Arfa (right)

Once when I was participating in a leadership program early on in my career, I was forced to realize that no matter where I am or what I am doing, I always have to be a disability advocate. It was towards the end of the year-long leadership program when I arrived at an event hosted at a restaurant where the only entrance had stairs. It was not accessible to me as a wheelchair user. Fellows in my class offered to lift me up the stairs. While that might have been possible, it wasn’t an equitable, inclusive, or dignified way for me to participate. The event should not have been held there, the restaurant should have been accessible, and I knew that if I allowed this to happen, there wouldn’t be a change in mindset for my classmates or for future participants with disabilities. So, I chose not to go, and went back to my car and cried the whole drive home.

Karen sits at a conference table, smartly dressed, speaking into a microphone. A woman next to her listens attentively.

I have served in many leadership roles within the disability community in both Denver and Chicago, including as Commissioner for the Mayor’s Office for People with Disabilities. Today I am the CEO of Access Living. Reflecting on my leadership journey, I offer some key takeaways:

Share your personal experiences as a person with a disability

For example, times where you felt discriminated against or had your options limited. Personal stories are powerful, so use them when you are at tables of influence or when educating others. Take your time — your story will grow and evolve over the years. Sharing your story might end up being the most powerful and useful tool in your toolbox for creating change, something our world needs most right now.

Find your mentors and champions

I worked for some of the great disability rights leaders who provided me with the knowledge and experiences that have gotten me to where I am today. We all need mentors like these, no matter how experienced we are in life. Think about who these mentors might be for you and what people you need to have in your circle to help you advance as a leader.

Know your rights — for yourself and others

There are so many more disability rights laws now than when I was growing up — not just the Americans with Disabilities Act, but Fair Housing, Air Carrier Access Act, Web accessibility standards, as well as state and local accessibility and human rights laws. Use these laws to not just enforce your own rights, but the rights of the generations that follow.

Don’t take the rights we have for granted

These rights always are a risk of being weakened or taken away. Despite our advancements, we must remain vigilant.

Small acts of resistance may be challenging, but they’re a powerful educational tool

— even amongst friends and colleagues.

Sometimes you have to be a disability advocate

—even when you don’t want to be one.

Know that your leadership and your disability are intertwined

You are bringing your life experience and your worldview to your leadership and that cannot be easily separated.

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