Now Is The Time

On Saturday, May 30, as Denise and I watched the protesting and rioting that occurred in many cities throughout the U.S., fear swept over me. In my lifetime, I have seen this before,  but I never was as frightened. I imagined the President declaring martial law and ordering curfews enforced throughout the country. In my mind, I saw the military forcing people to comply with the lockdown. I envisioned the President using the pandemic and the rioting as an excuse to "postpone" the November election.

 The protests were unquestionably justified and very much needed. The horrendous, horrifying killing of a Black man named George Floyd by a white police officer pressing his knee into Mr. Floyd's neck for 9 minutes as other police officers just stood by and watched, could not be ignored or tolerated. Hearing the President talk about using vicious dogs and enormous might of the military brought back memories of Holocaust events my parents experienced.  Politicians who asked for patience and calmness ignored the fact that Americans have been too patient for many years.

Now is the time that Congress must demonstrate that they represent their constituents. They must show us their ability to work swiftly, decisively in a bipartisan manner. They need to model how they can effectively compromise and create win-win proposals. Legislators' ability to collaborate with all colleagues should be more important than their loyalty to a president or a party.

There are many ways Congress can demonstrate leadership abilities. Gun control and immigration reform are areas that most people agree need to be changed. Being sheltered-in-place for months has shown that access to the internet must be available to everyone. The pandemic has vividly highlighted the need for health-care-for-all, including long term community-based support services. High unemployment offers the government the opportunity to create many new jobs by investing in building the new nation's climate-friendly infrastructure. Ensuring that anyone can afford excellent personal assistant services, medicine, durable medical equipment, and therapy they need can also create jobs and enable many people to live life the way they want.

Now is also the time to take a hard look at systems that may not be working for us. It is perhaps the best time to implement new innovative ways to operate. Are all the tax loopholes helping or hurting? The prison systems need major overhauling. Surely a way to educate all children and young adults can be developed. Has the two major political party construct outlived its usefulness? Should the public be able to vote on every piece of legislature, giving legislators and all of us a clearer idea of what people want? Can there be a government civil service branch that enables everyone, regardless of race, ethnicity, economic status, or disability, to work and positively contribute to society?

Society is at a critical juncture. We know that going back to the way we were functioning before the pandemic is not an option. We can allow society to disintegrate, or we can grab this opportunity to reshape our nation so that everyone can pursue the life they need and want. The choice is ours.

 

 

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My Speech Impairment

Throughout my life, one of the most frequently asked questions is whether I would like not to have Cerebral Palsy. I consistently answered, “No, but I would gladly give up my speech impairment.’ I always was quite comfortable with my disability. I enjoy being part of the disability community. I am proud to contribute to the Disability Movement and seeing the progress we made. I love the family and friends Denise and I continue to treasure. My disability has never stopped me from being active in my communities and enjoying life to its fullest. Without sounding too vain, I must admit that it feels terrific knowing that I climbed the Wells Fargo corporate ladder in a powered wheelchair. I would, however, liked to do all this while talking articulately. I never wanted to be an opera singer, or a cantor, or an orator. I often wish, however, that I did not always need to think about how I want to say something or worry about whether people understand me, or whether I’m speaking too slowly.  

Young children often ask wheelchair users, “why are you in that thing?” A simple answer such as, “I can’t walk,” or, “I have a disability,” usually satisfies their curiosity. When I tried saying that, they almost always run away screaming with fear. In high school, I sometimes tried striking up a conversation with a female classmate. I watched nodding her head as if she understood what I was saying when she wasn’t. For fun, I’d proposition her and smile as she continued nodding. I wish I had a dollar for all the time people hung up the phone as soon as they heard my voice. Whenever I’d meet a new friend or a new work colleague who I anticipated calling at home, I’d ask them to tell their families that if they get an obscene call, it’s probably from me. Occasionally I take advantage of my speech impairment. I probably passed my high school French oral final exam by mumbling. There are at least two speeding tickets avoided that way.

There are many ways I’ve learned to communicate. In elementary school, I had speech therapy 30 minutes daily. Exercises such as deliberately slowly breathing and removing peanut butter from the roof of my mouth with my tongue were a waste of time. However, it was helpful having the speech teacher engage me in activities where I had to talk a lot. One of the speech teachers cast me as Oliver Twist in a school play. She also debated me on numerous topics. Starting in high school, I have always asked at least one question or added a comment on the first day of every class. I did that to make it known that I can speak and planned to participate actively in that class. Frequently, I ask listeners, ‘did you get that?’ I’d wait for them to repeat or paraphrase what I said. Responding just with a ‘yes,’ tells me that they at least understood the question.

 When I present to a group of people who don’t know me, I usually start by saying, ‘For the next few minutes you are probably not going to understand what the f**k (or hell) I’m saying. It does get easier – haha.’ Their laughter breaks the tension enabling them to relax. In every group, there is always at least one person who naturally understand my speech. As I speak, when I sense that too many people are not getting what I’m saying, I glance at that person. If s/he appears to have understood, I may ask him/her to repeat what I just said; otherwise, I rephrase it. 

Between 1975 and 1978, I frequently spoke on sex and disability panels at Sexual Attitude Reassessment monthly workshops at UCSF Medical Center. One very memorable moment was when a co-presenter compared listening to me talk was like attempting to have orgasms. If you try too hard, it can be frustrating. Relaxing and enjoying the experience can be quite pleasurable.

 When I worked at Wells Fargo, I often was at 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. As we started talking about business and technical issues, I enjoyed watching the tension dissipate.  I often feel more accepted by the business community than many disability rights advocacy groups. Too often, there is a hierarchy in the disability community depending on the type of disability people have. People with speech impairments are usually near the bottom. This hierarchy is not relevant when we engage ourselves in issues other than disability.   

 Trying to mingle at company parties or during breaks at conferences can be difficult. Everyone usually stands hovering above my head. From my seating position, all I see are rear ends. Trying to be understood is nearly impossible. After 12 years of this at Wells Fargo, I mentioned it to one of my managers. He advised me to pre-arrange meeting people in the hallway at breaks. Why didn’t I think of that?

 The Telephone Relay Service (TRS) is free and available 7X24 to people who are deaf or hard of hearing or have a speech impairment. We can connect to Communication Assistants via a TTY, or phone, or at their website.  The CA calls the party you want to communicate with, reads your messages to them, and types their responses to you. In the early 1990s, Dr. Bob Segalman and members of the Speech Communications Technology (SCT) group succeeded in adding a speech-to-speech component to TRS. We can connect with CAs who go through training to readily understand us and reiterate what we say to the party we call. As it becomes more difficult for me to speak, I prefer texting.

 There are many Augmentative and Alternative Communication (AAC) devices that verbalize pictures, letters, words, and phrases that are pointed to by people with speech impairments. I don’t use any of these devices, but nowadays, when I give presentations, I use a free text-to-speech app on my IPAD.

 At the beginning of this blog, I said that I would gladly give up my speech impairment. Alas, at this stage in my life, I don’t see that happening, so I will go ahead and continue having fun with it.

 

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