In the pre-ADA era, while struggling for inclusion and putting forth an unending effort, a leader in her own quiet way took on the system with no help from anyone beyond her immediate family and friends. She had cerebral palsy and dyslexia, and was in for the fight of her life.
Here are some insights into that person’s heart and soul. Throughout her life, the purpose of her struggle was to be viewed as the equal, capable person she was. This was difficult in a society ruled by stereotypes and prejudices, and that expected people like herself to be content to live out their days in institutions. But she was not content. She was me, Karen.
This pandemic has reminded me to listen clearly to my calling from within, and to remind others of theirs. Prior to the ADA—as a twenty-six-year-old disabled person with cerebral palsy and dyslexia—I remember my heart tugging my spirit to move forward, to not settle for less, and to stand up for myself against a system of limiting expectations and outmoded ideas. I knew what I could accomplish. The experts didn’t.
So, in 1976, after being labeled as borderline mentally retarded for a second time—because with my dyslexia I did not test well—I couldn’t take anymore. I knew with all my being that I had to do something. I knew I had to fight for my life and push the limits like no one had before, and I knew I couldn’t let these experts get away with how they treated me. I felt like I had taken a beating, but I was not going to let the system break me. Through all the countless indignities, I just wanted a fair shake. I wanted to be treated with integrity and respect, but instead, the organizations that were supposed to help me used their guidelines and protocols to betray me.
I had already withstood countless blows to my soul. I was going to endure them no longer—especially after I was put into a sheltered workshop at the age of eighteen after graduating as the Valedictorian of my high school class. I confronted these issues single-handedly, and pulled myself out of the quagmire of the system with dignity and pride that I found deep within myself.
After many trying experiences, I came out the other side. I could have given up on myself—kept the hurt and anger within, and then hurt others with my resentment—but instead, I released my pain, dealt with it, and became humble—with a positive outlook on life that no one could take from me. The problem was that the system was designed in a time when most people with any sort of difference remained under the watchful eyes of state-selected experts. The idea of a self-chosen, self-directed life was not allowed or accepted, and seemed impossible.
This is what all my readers have spent their entire lives changing. They have tried to transcend the ableist idea that we must remain isolated, on the margins of society, with a payee supervising our funds and micromanaging our existence, never giving us a chance to live our lives, learn from our experiences, and make our own decisions.
For me, I fought for that right. I didn’t want anyone making my decisions for me or telling me what I should do with my own life. During this time in my life (1960s-1970s) that was an unheard of idea. Just like being thrown into a special education class, when I was a child, but not knowing or being given the information to defend myself would have consequences later in life.
Who would have thought that I would be ‘advised’ that I would be better off financially if I stayed at home and received a social security check, rather than pursuing a career? People with disabilities still get this same demoralizing advice. This demonstrates that the struggle is not yet over. Just as racial, gender, and medical equality continue to be challenged even though they are written into the law, so does this. This makes it all the more important for us to come together and let our voices be heard world-wide.
If I had never done this, and never spoken up to let my voice be heard, many changes in the world we live in today would not exist. They would not even be on the horizon. We must continue to speak out and discuss these issues that are so pertinent to our well-being.
If we don’t, progress will halt. Improvement will cease. All our efforts to be a helping hand to each other must, can, and will continue.
After the struggles of my childhood and young adult years, I earned an Associate of Arts in English with Honors, sat on the Executive Board of Protection and Advocacy, Inc. (now Disability Rights California), wrote and published a novel, got married, taught dance and fitness, invented adaptive chair aerobics, and had many rich and wonderful experiences.
There was no one in the school system to guide or direct me positively. The only people by my side were Al Gilbert, my beloved dance teacher, and my mother, Mama Katie. Everything else, I did through sheer determination and fortitude by myself. But Al and Mama made all the difference for me. The experts said I would never walk, but I learned now only how to dance, but how to teach others to dance.
Efforts for inclusion began long before the ADA and were largely self-directed. Many people, including myself, fought against tremendous odds. Being challenged was not easy for the powers to be. Many believed that ‘we’ needed their guidance forever. The truth is: we only needed a hand up and to be treated like human beings.
Let us dig deep into our hearts to find kindness and caring from within. Let us share it with others and give true support with unconditional acceptance to one another.
My question to you is: What can you bring to the table in support of disability rights and inclusion?
Karen Lynn-Chlup has been an advocate for people with disabilities since she was a small child. Karen was a pioneering leader in the disability rights movement. She inspires people with disabilities. She says to keep telling yourself, “If Karen can do it, then I can do it, too.” You can reach her at www.whispersofhope.org.
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