Americans with Disabilities Act and Self-Advocacy

President George H W Bush signed the Americans with Disabilities Act into law on July 26, 1990. The bill passed with bipartisan support having been modeled after the Civil Rights Act of 1964 and Section 504 of the Rehabilitation Act of 1973. 

Google writes that The Civil Rights Act of 1964 prohibits discrimination based on race, color, religion, sex, or national origin. Provisions of this civil rights act forbade discrimination based on sex, as well as race in hiring, promoting, and firing.

According to Pacer.org, Section 504 of the Rehabilitation Act of 1973 (commonly referred to as Section 504) is a federal law designed to protect the rights of individuals with disabilities in programs and activities that receive federal financial assistance. 

The ADA became the equal opportunity law of the land for people with disabilities. As important as the Act was in affording us rights, we still face significant challenges in reaching equal opportunity. Let me share with you some numbers that illustrate this point. According to the SCDD, the employment rate in 2016, the most recent date of data available, for the general population in California it was 76.5%, for those with disabilities it was 35%, and for those with developmental disabilities it was only 14.2%.

I feel these numbers speak for themselves, but many feel a personal story is more compelling, so I will share a little bit about my own life, the obstacles, the driving forces in my life, and the successes I have achieved.

I was born in National City, California, a suburb of San Diego. When I was 13, I had a tonic clonic seizure while on a Boy Scout hike. I went through a full battery of medical tests. Afterwards, the neurologist ushered me alone into his office and broke the news to me that I had epilepsy. He optimistically assured me I would outgrow it, but that never happened.

Because of my epilepsy, I couldn’t drive, so getting around town meant relying on my mother or riding my bicycle–bus service in National City was still in its infancy. Another way of saying it was I went through high school without a car.

I had other issues I had to contend with. I was a weak student and learning was slow and difficult for me. I would later, as I entered graduate school, find out that I had learning disabilities. Much of my secondary educational career was before the passage of Section 504 or IDEA. Likewise, my post-secondary career was also before the enactment of ADA.

Because of these difficulties I had to deal with, while my high school, classmates selected Ivy League or UC schools to attend, I chose Southwestern Community College. It was cheaper and far less academically rigorous. Even so I struggled through college.

Just because I knew my diagnosis, didn’t mean I knew how to navigate my life. Unfocused, I pursued things I loved but lacked the talent to reach them.

I transferred to SDSU and lived in the dorms. I studied Political Science and Philosophy because ideas mattered a great deal to me and still do. Later to make myself more employable, I also studied Economics. Upon graduating with a BA in Political Science, I entered the PhD program in Economics at the University of Kentucky. I found the studies there were way too difficult for me, so I returned home, feeling defeated and unemployable.

After I returned home, I tried to rebuild my life. Since I enjoyed computers, I tried to enter a computer programming college, but I failed the entrance exam twice.  So, I entered the Educational Technology Program at SDSU with the hopes of becoming a computer-based training developer. I should have realized that if I couldn’t program, neither could I develop CBT, but I thought if I tried hard enough, I could make it happen. True, I could handle the academics, but I simply lacked the talent to make a professional career out of it. This became quickly apparent after I graduated with my MA.

My life took an abrupt turn to the left as I had to deal with new disabilities. I ended up on SSI, receiving Medi/Medi health care, and living in a roach infested Section #8 apartment. I was impoverished, but at the very least I was independent–that was and still is important to me. 

Independent or not, I recoiled at living in poverty. I felt like a stranger on the outside looking at Middle Class life. I was born into the Middle Class, and I was determined to return to it. I had some computer skills, so I sought employment as an administrative assistant. This is a noble profession, but I lacked the talent for it. To make matters worse I got into web-design, which again I lacked the talent for.

During all this time, I accessed every government program I could think of to help me rebuild my life: Social Security, Medicare and Medical, Department of Rehabilitation, continuing education schools, and community colleges. My professional career was stalled, but I was busy participating in all these programs giving my life the momentum that I would use to keep me striving for more.

My passion for Political Science reasserted itself. The social welfare, safety net was no longer something abstract in books, but tangibly keeping my life afloat. I took this to heart. Being unemployed, I had the time to become politically active. 

I volunteered in a congressional campaign. I advocated in Washington DC on behalf of the Epilepsy Foundation. This opened doors for me. I became a member of the Board of Directors for the San Diego Regional Center. I chaired the Legislative Committee and traveled to Sacramento and advocated to legislators on issues of interest to SDRC.

I was still living in poverty, but I was making progress. I still wanted a full-time job with benefits that would afford me Middle Class status. A Consumer Advocate position opened at SDRC that I thought I was a perfect match for. I applied and interviewed for the position, but someone else got the job. I was disappointed but I carried on. Three years later the position became open again. I once again applied for the job and interviewed for it. This time I got it. That was 20 years ago.

I soon relocated closer to work, and now live in a one-bedroom apartment in the Corridor, a narrow strip of land located between City Heights and North Park–no more Section #8.

At work, my job duties have varied over the years, but my commitment to advancing self-advocacy in San Diego and Imperial County has remained unabated. I began to see how to live with my disabilities and my life came into focus. I was no longer the outsider looking in having returned to the Middle Class on my own terms.

I have received local and statewide recognition for my efforts having served as president of San Diego People First and now serving as vice-chair of the Statewide Self-Advocacy Network. My commitment to self-advocacy has grown and carried me through the pandemic.

As I look back over the years since Section 504, IDEA, ADA were enacted, I see profound progress in our lives. Schools now have transition programs to help students with disabilities enter the workforce and adult life. CMS with its HCBS Final Rule will further integrate us with our communities and bring us economic justice. The advent of Self-Determination to California will give us greater choice to receive the services that will support us to achieve our potential and dreams.

Before I close, let me tell you what Self-Advocacy means to me. It is the social justice movement where we, people with developmental disabilities, individually and collectively take charge and responsibility for our lives and voice our wants, needs, and dreams to our family, friends, regional center staff, and direct care providers. 

My understanding of self-advocacy has grown also evolving into interconnectedness, the belief that everyone is connected and equal. Through our diversity, we bring wealth and prosperity to America and celebrate our disability pride.

There are simple steps you can take to advance self-advocacy in your life:

  • Get to really know yourself, your wants, needs, and dreams
  • Communicate with your family, friends, co-workers, regional center staff, and direct care providers issues that really matter to you
  • Link up with other self-advocates and find common ground and vision
  • Join a People First organization or self-advocacy organization
  • Share your story with the media, legislators, and other government officials

We have arrived and are now on America’s radar screen. America is beginning to see us, people with disabilities, as equals, having dignity, worth, and purpose. We are witnesses to this change of hope, promise, and equality being valuable contributors to society. Now is the time to strengthen our commitment to the ADA, Rehabilitation Act, Lanterman Act and IDEA. Nothing About Us Without Us!  If we unite, and advance the cause of self-advocacy, we can put flesh on the bones of ADA, and make equal opportunity a reality for people with developmental disabilities.

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