Thank you for asking me to present at your conference. I was eight years old the last time I was asked to be on the stage at a UCP Conference. As my mother helped me up the steps to the stage, I began crying hysterically and was quickly whisked away. I hope to redeem myself.
I want to tell you that children with Cerebral Palsy do grow up, and some live long, productive, happy lives. I will be 70 years old at the end of this year. I learned a lot along the way, and today I want to break a few myths, offer unsolicited advice, and have some fun.
People listening to this presentation who know me from years ago may be surprised to see my communication assistant. Ten years ago, my spine compressed. I am now an official CP Spinal Compressed quad. Whereas Denise, my wife, and I only used 10 hours per week of personal assistant services for cooking and cleaning, we now have attendants 16 hours a day who help me with almost all of my activities of daily living.
UCP played a significant role during my childhood. They paid for a van to transport me to therapy sessions, where I received physical, occupational, and speech therapy twice a week. I was 'presented' twice a year at a meeting where medical students listened while a doctor examined me and prescribed new exercises and other ways to 'make me better.' I remember walking in front of the students wearing nothing except a diaper as the doctor described my gait using words that always had at least five syllables.
When I was four years old, the doctor suggested that I should be institutionalized. My parents are Holocaust survivors, and the doctor thought I was too much for them to handle. My father visited the institution and saw babies lying in hallways. He freaked out and told my mother to take my sister, brother, and me and stay with my aunt in Florida. He told the doctor my mother had left him because of his suggestion. When we returned, there was no talk about putting me away.
Besides teaching children with Cerebral Palsy how to speak as clearly as they can, speech therapists need to teach how to keep listeners engaged. Having a speech impairment is unquestionably the most challenging aspect of my disability. Speech therapy was helpful not because of the exercises but because my speech therapists insisted I speak in complete sentences. I had a bad habit of grunting and using half words. My first debate was with my speech teacher about whether makeup should be taxed. I knew I won that debate when her last comeback was that I would change my mind when I was older. Most of my 'non-verbal' friends prefer using a letter-board instead of an expensive, state-of-the-art augmentative communication device. They say that with the letter-board, listeners stay engaged by reading the letters instead of just waiting for the entire word to be typed and read aloud.
Occupational therapy was also helpful not because of the exercises but because my occupational therapists were creative and ingenious. They came up with new ways to do what I wanted to do. They were the first professionals who convinced me there is always a way. If therapists were entrepreneurs, they would call the gadgets 'innovative technology.'
Knowing that my career is primarily in the information technology field and my advocacy is with the Disability Movement, many people request that I evaluate the assistive technology they developed. My first question to them is always how can the general public use your device? The main difference between an assistive device and an innovative invention is the market size. If the general public uses a device, people with disabilities are more likely to know it exists, know how to use it, and be able to afford it. The inventor will have more money to maintain and upgrade the gadget. One of my favorite examples is texting. People who are deaf or hard of hearing have been texting for decades on expensive, clunky TTYs. Today the whole world texts.
As I age, my ability to speak and type has deteriorated. I am highly interested in brain-computer interfaces enabling people to think and have a computer speak or type their thoughts. The UCP Research Foundation is working on this, and so is Google. I hope the Foundation and Google collaborate. If the general public use brain-computer interfaces, so will people with Cerebral Palsy.
Growing up in the 1950s, I liked physical therapy the least. There was an obsession with walking. Walking was synonymous with 'being normal,' regardless of how fast you walked, what you looked like, or how tired you were afterward. Unfortunately, this obsession is still around. I've watched a few webinars about new advances in therapies for children with cerebral palsy in the last few years. I cried watching kids walking in parallel bars, wearing exoskeletons as their young parents looked longingly at their precious child struggling to take a step.
As a child, I wondered why walking was so important. Sure many architectural barriers make using wheelchairs difficult, but society can remove these barriers, improving the environment for everyone. I was 32 years old before I learned that walking was a biological advantage. When Denise and I tried to get pregnant, we learned that people who sit all day, for example, truck drivers, are sometimes infertile due to their testicles getting overheated. There are always ways around barriers. Truck drivers sit on ice. Denise and I adopted a wonderful baby.
The danger of having physical therapists focus on walking is that I associate exercises with pain and failure instead of fun and a way to feel good. In the documentary Crip Camp, I quipped that the counselor that gave me kissing lessons was the best PT I ever had. The reality is that my body only feels good during sex. Many studies have shown that most people who become paralyzed would choose sex rather than walking. Isn't it time we change our therapeutic priority?
I want to switch gears and talk about the employment of people with disabilities, which has been my advocacy focus. We have fought for and succeeded in passing and implementing many anti-discrimination in the last forty years. Millions of dollars are spent annually by government and not-for-profit agencies working diligently to improve the employment rate of people with disabilities. Many incentive programs exist to persuade employers to hire this cohort, remove them from SSI/SSDI rolls, and lift them out of poverty. Many incentive programs entice SSI/SSDI recipients to find employment. Despite these efforts, the employment rate of people with disabilities continues to be pitifully low, with a 2021 employment rate of just 19.1%. Most households with disabled members live in poverty. We believe a significant reason for this is the ongoing need for Medicare and Medicaid.
SSI/SSDI is our country’s safety net. An income replacement system enables people to live when they cannot participate in substantial gainful work. Undeniably, some people with disabilities need SSI/SSDI. Regardless of our ability to work, we all need good, affordable, and accessible healthcare throughout our lives. We also may need good, affordable, and accessible long-term services and supports(LTSS). Healthcare and LTSS are not part of a safety net. They are part of our civil rights. We must acknowledge that LTSS are also part of civil rights.
I am starting a campaign to ask Congress to immediately undertake a detailed study, including a financial impact / cost-benefit analysis and a migration roadmap for decoupling SSI/SSDI from Medicare/Medicaid. I surmise that this decoupling will be cost-effective and enable many people with disabilities to seek employment. Your support of this campaign is crucial.
Denise and I are fortunate to live in California, where Regional Centers pay for all healthcare and LTSS for people with developmental disabilities regardless of income or assets and define Cerebral Palsy as a developmental disability. Denise and I always planned to need more personal assistant services as we age. We never imagined that it would cost as much as it does. We should replicate the California Regional Centers model in all states for all disabilities.
We often hear that employers won't hire people with disabilities and that workplace discrimination exists. My experience is that most businesses are more ready for us than we are for them. A key to my success is taking the responsibility to make my employers and colleagues feel OK about me and that I must fit in. Assuming this responsibility gives me the power to control the situation. Thinking that other people need to be more understanding and accommodating relinquishes my power to them. Politically, I aggressively fight to break down barriers. In my personal life, I always find ways around obstacles.
In one-on-one meetings and giving presentations to people who don't know me, I often start by saying, 'for a few minutes, you might not understand what the hell I'm saying. I know that I have a terrible New York accent.
When I worked at Wells Fargo, I often attended meetings where no one knew me. As I rolled into the meeting, the tension in the room became intense. When I began speaking, people's anxieties increased. I enjoyed watching the tension dissipate as we discussed business and technical issues. I often feel that the business community accepts me more than many other communities.
Speaking about feeling accepted, I learned the true meaning of that feeling from my son when he was a baby. Since Denise took care of him all day while I worked, I had night duty. When David woke up hungry at 2 am, he didn't ask if I could get up and warm a bottle. David didn't ask if I was too tired or if I would do it. He made no assumptions as to what I could or could not do. David just cried and demanded his bottle. When he needed his diaper changed, and when I was around, he insisted that I do the honors regardless of who was available. That's acceptance!
Here are a few suggestions. First, please read Denise's book 'The Question of David.' It's about how we adopted and raised David and is available on Amazon.
Second, please look at Abilicorp.com, where I describe my newest venture, The Abilicorp Foundation, whose mission is to initiate and promote Disabled Owned Businesses. The Foundation's first project is the Abilicorp Personal Assistant Services(ABPAS), whose mission is to establish an attendant referral and management agency that will provide people with disabilities, elders, and their families with complete control of their attendants' employment and training, and work schedule, and management. ABPAS will also ensure that attendants receive livable wages, healthcare options, paid time off, training opportunities, and support. The Abilicorp has information about ABPAS, access to all my blogs, and my contact information. I'd appreciate your feedback and any questions you may have.
Third, please help change the mantra of hiring people with disabilities to supporting Disabled Owned Business Enterprises. Encourage people with disabilities to take leading roles in religious institutions, community organizations, and all aspects of society—support legislators with disabilities who will use their disability experiences to improve our country.
Most importantly, whatever you do, please have fun! Too often, we get so involved with school, jobs, volunteering, and politics that we forget to appreciate our loved ones, the beauty surrounding us, and the world's wonders.
Go-Go-Go!
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