KPFA - Pushing Limits

Today we integrate some of the events of our nation into our disability routines.  We’re nine days from an attempted coup at the Capital Building in D.C. as the pandemic rages and vaccine hope arises.  Three callers living with disability contribute to the program.

One of our elder listeners with a severe disability, Mylene, speaks of her problem getting vaccinated.   Ed, another listener, brings his experience in living with depression and working for candidates in Georgia.  Ed talks about his disappointment that people allowed the victory in Georgia to be overshadowed by the doom and gloom of the Capital take-over.

And, Buffalo gives a witty word-playful description of the capital insurrectionists  introducing the concept of “errorists.”

Shelley Berman’s commentary wraps her personal experience getting vaccinated with the information about the Capital riot which continues to be exposed.

Adrienne Lauby, Mark Romoser and Eddie Ytuarte contributed to this program.

Produced by the Pushing Limits Collective, with help from KPFA Board Operator, Rod Akil.

Weekend of Jan. 16-17

~~~

Join us for a free, online discussion group, the first in an educational series in the spirit of Judi Chamberlin called ‘Judi’s Room’, a collaboration between MindFreedom International  and ‘I Love You, Lead On”

Wednesday, January 20

To register.

~~~

A disability film festival.

Nine Captioned and Audio-Described disability related films online with a Group Discussion afterward.

View the lineup.

Most are stories of interesting individuals with disabilities.  But they include  many interesting themes – assistive devices, service animals, performing and public image, and dating.

Register here.

The post “Call In ~ Call Out” Pushing Limits – January 15, 2021 appeared first on KPFA.

KARAYZY Past

Hopeful Future

Disability in 2020

DEEP breath

Before the PLUNGE

Disability in 2021

Pushing Limits

Not quite business as usual

We are honored and thankful to spend part of New Years Day with YOU!

Go ahead and make merry, but be ready to take note of upcoming issues and actions. Adrienne, Mark, Eddie and Sheela (maybe Josh and Shelley, too?) will talk, roundtable fashion about the hard times and delicious nuggets from this year…yes, there HAVE been delicious nuggets.

Also, excerpts from “The Advantages of Having a Speech Disability” by Jacob Lesner-Buxton. (Full text below)

Listen in for some hope for the coming year and to prepare for the battles to come.

Produced by Sheela Gunn-Cushman.

_______________________

“If someone offered me ten million dollars, I wouldn’t give up my disability.” I have used this line in many training sessions that I do for work. As insignificant as I think the line is, it has always seemed to get the most reactions from an audience. People with disabilities often tell me that they have never known someone that had so much pride in their impairment as I have. Even elders in the disability community are blown away by the scale in which I celebrate my identity.

However, that statement about not trading my disability for money is not entirely true. There is one disability that I might want a doctor to find a cure for me. I might even cash out my retirement to pay for the operation. The disability, for which I would be willing to cash out my retirement to fix, is my speech. For those who don’t know I have a disability that makes me harder to understand than most people. The disability has cost me many social and economic opportunities. It makes conducting business over the phone hard and it has caused an untold number of negative reactions from people laughing in my face to assumptions about my lack of cognitive ability. Rarely have I enjoyed hearing myself on tape or seeing myself in videos. Up until the age of seventeen, I had never said anything positive about my voice. While I have grown to love all the parts of my body, I still dislike the sounds that emanate from my mouth.

However, my speech impairment has taught me some great lessons that assist me in daily life such as:

In my work, I attend a lot of government meetings and serve on several committees. A lot of these meetings involve politicians, spending 15 or 20 minutes before a vote trying to justify to the audience why they are making this decision. For example, I was at a meeting about banning army recruiters from high schools in my city, and a committee member who voted in favor of the ban told 18 minutes of war stories involving his family. I doubt that anybody called him up the next day and said “ Frank I. hated your vote but damn it you sure tell a good war story.

Few people care if a public official has sympathy for their cause if they don’t back up those words by passing legislation. I know that people have a hard time listening to me and therefore I only ask the questions I need to at meetings and I don’t spend an inordinate amount of time trying to appease both sides of an issue. If people want to hear how I made my decision, they can e-mail me. However, as of now, I have never been asked to provide an explanation for one of my decisions.

Another thing I typically don’t do at meetings is reiterate what another committee member says. I serve on committees with people who make the exact same comments one after the other. Again, since it’s challenging for others to focus on my speech, I prefer to bring up new points instead of rehashing what someone has said. Often, people on my committee reiterate because they want to join the chorus of those heaping praise on a government employee or program. While giving public acknowledgment is great, if I don’t have something unique to say, I keep quiet. Besides, the best way to give praise to government employees is by having short meetings that allow them to get home earlier.

“Yeah“, ”Uh-ha”, and Wow”, are three examples of responses people give to let others know that they are not in the mood for a conversation. They could be busy or simply don’t want to engage with that person. Getting these responses makes me think the person is not understanding my speech. Therefore, I try to have conversations only when I can tell that the other person is engaged in what I am saying.

My system of trying to make sure people are up for conversations before talking isn’t perfect. Some times I need to tell my boss something when he’s busy and I prepare myself for getting an “uh-ha” and “ok “ response from him. Other times people do want to talk, but they can’t understand me so they do the “uh-ha” stuff. Often, they confess, that they can’t understand and get someone else to translate or find a different way to communicate.

Once I was getting the “uh-ha” treatment from a woman when I was talking about a cancer diagnosis that I had gotten earlier that day. Feeling perplexed by her reaction, I asked if she understood me. After hearing she did, I quickly shut up. I didn’t want to waste energy trying to get support from a person who had little interest in giving it.

It puzzles me how other men can carry on a conversion with someone who does the “uh-ha” and “ok” routine. Once a guy at my office was 45 minutes early for his appointment and waited in the lobby. A colleague of mine working in that area became the center of his attention. For forty-five minutes he rambled on nonstop to her responses of “uh-ha” and “wow”. While watching this interaction, I wondered if the man understood that his chatter wasn’t impressing my co-worker. Maybe he believed, as other men do, that through persistence he could somehow win her over. With my speech impairment, I know that if someone I am attracted to doesn’t respond to my game in five minutes, then there is a good chance she won’t reciprocate my feelings.

Many people with speech impairments discover tricks for getting help from others who might not understand us. For instance, when I have to take a taxi, I often print out a map of where I am going. I have been known to bring photos of the items I want to buy to different stores and write messages on my cell phone to show people who are having trouble understanding me.

Perhaps the most important skill in my arsenal to get people to understand me is developing scripts for my interactions with doctors, workers at the post office, bank tellers, etc. Like actors, I often rehearse these scripts before doing errands. I find that having a script is effective so that I don’t get tongue-tied when trying to make my requests.

Using scripts and props in everyday life has helped me tremendously. I notice when I forget to bring tricks like maps for the cab driver my frustration level increases. While I am waiting for a company to develop training on “how to understand Jacob”, at least I can get my needs met by doing a bad Charlie Chaplin impersonation.

Up until now, I talked about lessons that have a strong correlation to my speech disability. However, the next lesson may be tough to measure. I believe that having a disability has helped keep people who are superficial from trying to be my friend. I know that that statement is subjective as hell so let me explain.

First, about 90% of my friends have other people with disabilities in their lives. Their existing relationships mean that they have been exposed to people like me, therefore they didn’t appear to be nervous at our initial meeting, They also don’t care about what others think which is helpful since people sometimes stare when I’m out in the community. From my speech to my gait, I know that I don’t attract people who only want to associate with model types.

Even though it has taken me a while, I’m ok with not being the typical California pretty boy portrayed in the media. Moreover, I don’t want to try to open someone’s superficial eyes to the wonders of getting to know someone with a speech impairment. I spent too much of my life trying to make myself appealing to those people and ignoring the friends who were ready to accept me. Although I have conflicts with friends from time to time, I don’t feel that I attract very many individuals who exploit the connections they have with me. I know that many people with disabilities who are befriended by those who are interested in exploiting them and I feel fortunate to have such trustworthy people in my life.

For those who are reading this who are looking to be inspired, buckle up because this last lesson shows my devilish side. See I sometimes use my speech disability to get away with saying things to people knowing they can’t understand me. For instance, while attending a summer program in high school, I told one of the other attendees he benefits from systemic racism and class privilege. He had been bragging about his wealth saying that once women see his house and BMW, they can’t stop french kissing him. Sick of his bragging, I pulled him aside and told him he was privileged using word straight out of a Marxist study group. I prefaced my statement by saying “I know you not going to understand what I’m about to say.” After my speech, he thanked me.

Looking back I think the guy was overstating his wealth, but I felt satisfied for speaking my mind. There have been times where I have been in meetings with people who I found annoying, and I mumbled something to a friend about them. They couldn’t understand but my friends and I would extend devilish glances like we are passing notes in 7th grade. I still get a kick out of being able to talk crap and sometimes get away with it.

I hesitated about writing this article. From one perspective, a list of lessons one learns could sound self-indulgent and preachy, yet it could also be seen as encouragement for those who have speech impairments to take pride in their disability. As I mentioned, not all perks from having a disability will be universally seen as good. However, some might consider the more devilish perks as being small ways to screw with an ableist society.

Lists showcasing the government benefits of all types of disabilities should be handed out by hospitals, schools and featured on government websites. Doctors could present them along with flowers, sparkling apple cider, and a “congratulations your child is disabled” sign shortly after the baby is diagnosed. I know the idea of celebrating disability might seem jarring to some but it could be a change from the messages of doom and gloom that many doctors give parents. I am sure some families may enjoy this new approach.

A “congratulations you’re disabled” party should be repeated once every two or three years for the child and it should be thrown by his or her school district. While some might see having a party for being disabled another sign of society babying millennials, I would argue that there needs to be more investment in disability-positive activities. A local school district reportedly has an unspoken rule about not bringing up a student’s disability with them until they are four months away from graduation. While I have heard conflicting accounts about the existence of this policy, the fact that this rule could exist shows that institutions still aren’t comfortable with disability.

One of the results of this school district trying to cover up disability is that about 36% of its graduates who were in special education drop out of community college in their freshman year. Perhaps one of the keys to reversing that trend is to institute practices such as disability pride celebrations into the curriculum, rather than avoiding the disability issue until the last possible moment. While it might seem unusual to tell a student about some of the advantages of having a disability such as the ability to gossip behind people’s backs, it might get them laughing. Their laughter, the corny celebrations, and the lists might exist in a society where taking pride in one’s disability is the norm, not the exception.

9-15-20

Jacob Lesner-Buxton lives with Cerebral Palsy and his essay titled, “The Advantages of a Speech Disability,” was a 2020 highlight. Jacob is based in Santa Barbara where he is a System Change Advocate at the Independent Living Resource Center. You can find more of Mr. Lesner-Buxton’s writing on his facebook page and through the Berkeley Disabled e-group list.

The post Karayzy Past, Hopeful Future – Pushing Limits – January 1, 2021 appeared first on KPFA.

A half-hour radio show providing critical coverage of disability issues and bringing the insight of the grassroots disability movement to the general public. The show alternates weekly and airs on Odd weeks Friday 2:30pm.

The post Pushing Limits – December 25, 2020 appeared first on KPFA.

Less than 1% of U.S. residents live in nursing homes*, yet between 30-40% percent of all COVID-19 deaths have occurred in these institutions.  One hundred thousand people have died due to the coronavirus in various types of nursing homes. These shocking numbers are raising big questions.  And the biggest question is, will these deaths galvanize big changes in the care of disabled and older people? For decades, our guest, disability activist Lydia Nunez, has sounded the alarm about ongoing nursing home abuse and the conditions that gave rise to this pandemic tragedy. Even before COVID, over 80% of nursing homes had infection control deficiencies and were rife with abuse and neglect.  And it comes as no surprise that the biggest offenders are nursing homes caring for residents of color.

Listen in to hear Lydia’s analysis of these and other problems, and her solutions for better care for our disabled brothers and sisters.  These who have routinely ended up in these institutions are now routinely dying of Covid-19.  Something’s gotta change! This hour-long fund drive special is produced and hosted by Mark Romoser and Adrienne Lauby.  Thanks to Josh Elwood, Helen Walsh of “Diverse Disability Media”, and Toby Edelman for assistance. Lydia Nunez Landry is a disability rights advocate living in Houston, Texas.  Her advocacy work centers on the rights and safety of institutionalized disabled and older people. She is a social worker and a certified volunteer long-term care ombudsman. Lydia’s activism draws on years of study in disability, critical race, queer, and feminist theories.  She’s the mother of two, a member of ADAPT and a board member of Not Dead Yet.  Her rich life history includes a magna cum laude degree from the University of Houston-Clear Lake and emergency post-hurricane work along the Gulf Coast.

———————————————————————————

Facts and More about the Covid Crisis in U.S. Nursing Homes and the Neglect that Led To It. (Resources provided by Lydia Nunez)

1. According to the office of the Inspector General, 1 in 4 cases of abuse and neglect in congregate nursing facilities goes unreported.

2. 1 in 5 visits to the ER from a nursing home is the result of confirmed abuse (same report as above) 3. In the span of five years, the number of abuse deficiencies in nursing homes more than doubled with 42.6% of abuse citations classified as the highest level of severity. (Same inspector general’s report) 4. As of the last week of November, more than 100,000 people died of Covid-19 in long-term congregate institutions.

5. The US Government Accountability Office found serious problems in nursing home quality, including problems protecting residents from abuse and weaknesses in government oversight. Even when abuse was reported to the state, enforcement actions were not implemented. 58% of the abuse was perpetrated by staff. 6. Racial disparities in nursing homes are pronounced with BIPOC in the lowest rated facilities–according to U.S. Government’s Centers for Medicare and Medicaid Services. The nursing ‘home’ “The Resort” in Texas City, which is a facility with predominantly Black residents, gave residents (some without consent) ” hydroxychloroquine, a drug not approved for treating COVID-19″.

7. In nursing homes where 60% of residents are Black or Latino, Covid cases are twice that of nursing homes with predominantly white residents. 8. The nation spends $170 billion annually on nursing homes (this was before they were given 20 billion during the pandemic).

9. Reporting COVID cases and deaths (that is, nursing homes) wasn’t mandatory until June 2020. Despite reporting requirements, only 80% of nursing homes have complied. ————————————

*For the purposes of this article and radio program “nursing homes” is used as an umbrella term that includes many forms of long-term care as well as other congregant living facilities such as group homes. Original air date: 12/11/20

The post COVID Death Toll In Nursing Homes – Pushing Limits – December 11, 2020 appeared first on KPFA.

Disability writer and teacher Kenny Fries discusses the plight of German people with disabilities during the Nazi era.  At least 200,000 people with a wide range of disabilities were murdered in an attempt to cleanse “Third Reich” society.   At the same time, disabled German war veterans were feted with honors by the Nazi regime.   It was arguably the worst modern tragedy to occur to the disabled community.

“Unlike the Holocaust, there are no T4 survivors. We know about T4 and its aftermath mainly through medical records and from the perpetrators. . . That is the main reason I write about what happened to disabled people during the Third Reich . . . This is my way of bridging the silence, of keeping alive something that is too often forgotten.”   Kenny Fries

This history should never be forgotten and Pushing Limits is pleased to have Kenny Fries fresh from a Fulbright Lecture titled, “Bridging the Silence,” about his Aktion T4 research.  That research led to his video project “What Happened Here in the Summer of 1940?” and his forthcoming book “Stumbling over History: Disability and the Holocaust.”

Kenny Fries received the Creative Capital literature award for In the Province of the Gods. He is the author of Body, Remember: A Memoir and The History of My Shoes and the Evolution of Darwin’s Theory, and the editor of Staring Back: The Disability Experience from the

Inside Out. He teaches in the MFA in Creative Writing Program at Goddard College.

Kenny’s work has appeared in The New York Times, Washington Post, The Progressive, Catapult, Los Angeles Review of Books, and in many other publications and anthologies. He wrote the Disability Beat column for “How We Get To Next“, and developed the Fries Test for disability representation in our culture. His work has been translated into Spanish, German, French, and Japanese.

Produced and hosted by Eddie Ytuarte.

The post Disability in Nazi Germany – Pushing Limits – December 4, 2020 appeared first on KPFA.