May 4, 2022
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!
