Friday, November 5, 2021, 2:30 pm PST on KPFA radio
When an old friend went to the hospital and suddenly found his moderate disability had become both severe and life threatening, Jim Van Buskirk wanted to help. Although he lived over a thousand miles away, Van Buskirk found a useful role in posting daily updates on a Caring Bridge site. It was certainly emotional but becoming somewhat routine until… Jim found himself lying in a hospital bed too.
Jim Van Buskirk tells this unfolding story.
We also talk about Buskirk’s work with the Final Exit Network, a group of volunteers who educate qualified individuals in practical, peaceful ways to end their lives. They offer a compassionate bedside presence and defend people’s right to choose their own death.
Produced and hosted by Adrienne Lauby and Shelley Berman.
In 2005, Cal Montgomery burst into the disability movement as an intellectual who both made sense and was fun to read.Â His three-part series on medicalization in the disability magazine, Ragged Edge, took book reviews to a entirely new level.Â
Now, after years of writing, entertaining and educating us, Cal Montgomery comes to Pushing Limits.Â He’ll be in conversation with Corbett Joan O’Toole to discuss some of the people whom the movement has most struggled to include. They’ll and ask the question, “What does disability rights look like for those with the highest support needs, anyway?”
Here’s a taste of Cal’s Montgomery’s writing:
“I’ve watched people — mostly people who consider themselves to be supporters of disability rights — react to me as my ability to control my body deteriorated again and I slowly slipped across whatever lines they were using to mark the boundary between “high-functioning” and “low-functioning.” A lot of them can’t handle it.Â If they’re very polite they make some kind of excuse, but either way most of them are no longer in my life.” (“Defining Autistic Lives: A review of ‘Autism is a World,'” Cal Montgomery, Ragged Edge.)
“…while services for physically disabled people were to a significant extent organized around actual needs that people wanted met and so transition from large institutional settings to the community could be accompanied by significant gains in self-determination, services for people with I/DD tended to center on containment, control, and cost-effectiveness.”Â (“Wolfensberger at the Door,” Cal’s Blog)
Cal Montgomery is a white, educated, trans, queer, autistic, physically disabled activist and survivor of long term institutionalization — and is someone often considered outside the reach of disability rights. He is active on twitter @Cal__Montgomery
Corbett Joan OToole is a white queer disabled elder in that movement that has excluded Cal and others.
Mollie McLeod produced and hosts the program.
Cal Montgomery’s recent writing is available at Cal’s Blog and on twitter @Cal__Montgomery. Cal’s older writing is available at Raggededgemagazine.com Corbett Joan O’Toole’s book, “Fading Scars: My Queer Disability History”, 2nd Edition is available at Amazon
“I want you to know, if those judges of normality wound you, like they have me and so many others, how to stitch yourself up and fight for a world that is not governed by those judges.”
Jonathan Mooney in conversation with Josh Elwood and Adrienne Lauby. With technical support from Rod Akil, Denny Daughters, Sheela Gunn-Cushman and Lucretia Burton
Iâ€™m a dyslexic writer, speaker, and do-gooder who did not lean to read until 12 years old. I faced a number of low expectations growing upâ€”was told I would flip burgers, be a high school dropped out and end up in jail. Needless to say there hopeful prophecies didnâ€™t come to pass. Opposed to being a high school drop out I became a college graduate from Brown university with an honors degree in English lit; instead of flipping burgers I ended up writing books, the first of which I wrote at the end of the 23 as an undergrad; And instead of becoming an inmate I become an advocate creating organizations and initiatives that help people who get the short end of the stick.
Iâ€™ve won many awards for all of this â€”The Harry S. Truman fellowship for public services, Finalist for a Roads Scholarship, LA Achievement award from The Lab school of Washington where I shared the stage with Vice President Joe Bidenâ€”and been featured in/on HBO, NPR, The New York Times, NBC, Fast company, and many other media outlets. But what Iâ€™m most proud of is not that I proved some people how doubted me wrongâ€”but that I proved the many peopleâ€”my mom, a teacher named Mr. R, my wife Rebeccaâ€”right, not just about my potential but about the potential for all of us who live and learn differently.
The stories of people with disabilities are often lost in the midst of armed conflicts, seen as just another tragedy amid the horrors of war. But a new paper by Human Rights Watch shows a pattern of harm and offers specific recommendations to mitigate the suffering.
Today, we talk about war and other current issues with our listeners. If you live with a disability or are part of our disability community as a family member, care-giver or friend, call us at 1-800-958-9008.
Should the prevention of war be a top priority for the disability justice and rights movement?
Listen (29 min) In this program we play music from Mary Lambert, talk some about being disabled and finding yourself in a yet another crisis, and give a big shout out to those of us with mental disabilities.Â Â We also open the phones for listener calls.
You might know Mary Lambert from her work with Macklemore on the song â€œSame Loveâ€ or, as I call it, â€œMy Love She Keeps Me Warmâ€ or from her hit song, â€œSecretsâ€. Her latest album, Grief Creature, she says, centers around trauma and mental illness. Sheâ€™s courageous, fun and a wonderful singer!
Due to the copywritten music in this program, this archived version will only be available at KPFA for 14 days.
Hosted by Mollie McLeod & Adrienne Lauby
Production help from Shelley Berman, Sheela Gunn-Cushman, Rod Akil and Jose Gonzalez
Able-bodied people tend to freeze up when someone with an unfamiliar disability shows up in their environment. They suddenly turn away, speak foolishly, or bumble too aggressively in our direction. The result is awkward – and sometime dangerous.
Questions arise: Should I help someone by pushing their wheelchair? Can blind people cross the road without assistance? What do I do if I donâ€™t understand someone with a speech limitation?
The disability etiquette that answers these questions is our starting point with our guests this week.
Laura Millar and Bobbi Pompey, two activist/service providers from the disability community, don’t stop with etiquette. They use these common questions to open doors to fundamental issues. Going deeper than Miss Manners ever did, theyâ€™ll talk about assumptions, the limits of assistance, stereotypes, the beneficent helper syndrome and more.
Join Eddie Ytuarte for a validating and challenging thirty minutes.
Biography of Laura Millar: Laura Millar a blind sex educator, community organizer, researcher and self-proclaimed disruptor! With a Master of Public Health as well as a
Masters in Human Sexuality, Laura conducts research and facilitates conversations that examines how individuals who are blind or low vision learn about and navigate the world of dating, sex and intimate relationships.
Laura offers everything from one-on-one education to in-services, trainings and workshops, for individuals who are blind or have low vision, their family members and the organizations that serve them. Laura is committed to ensuring that sexual health information and services are comprehensive, inclusive and accessible for everyone. If you have questions or would like to talk to
Once more around the Jan. 6 insurrection at the Capitol Building- – this time through the eyes of disability.
The uprising threatened particular individuals in a building with a lot of history. Some of those individuals live with disability and some of that history is intertwined with accessibility struggles and successes.
Mitch Jeserich worked in and around the Capitol Building for several years as a wheelchair-using reporter. He joins us for a description of the physical structure of that edifice and some stories about what it was like for him to be inside the building.
We hear a clip of California Congressmember Jackie Speier who lives with PTSD because she was shot five times in an ambush in Jonestown. Representative Speier was in the capital gallery when the rioters breached the doors.
Support the deaf community’s call to replace Trump supporter Heather Mewshaw who has been hired as the ASL interpreter for the daily White House press briefings. Sign here.
If you are trying to get an appointment in Sonoma or Contra Costa counties for a covid-19 vaccination, try Optum Serve. Currently, appointments appear to be limited to those 75 or older.
This program comes surrounded with the insight, wit and jibes of our host, Shelley Berman. Descriptions of photos for those with screen readers are below.
Produced by Shelley Berman with help from Mark Romoser, Sheela Gunn-Cushman and Adrienne Lauby.
PHOTO DESCRIPTIONS and CREDITS Mitch Jeserich from a video by Sandy Sanders. A white man in a cap and heavy sweatshirt sits in a wheelchair in a public square. He has a short beard and a mustache.
A man from one of the many protests by the disability community. Quite a difference from the Confederate flag carrying insurrectionists! (Photo courtesy of ADAPT.org)
A white man sits, probably in a wheel chair. His yellow tee shirt reads, “Fascism Sucks”. This photo comes from one of the many protests by the disability community. Quite a difference from the Confederate flag carrying insurrectionists! (Photo courtesy of ADAPT.org)
A photo collection which compares how the Capitol police treated disability protestors during the fight to save the ACA (Obama Care). The four photos on the right show protesters being hauled out bodily and the two photos on the left show police being hands off. P.S. No one died during the disability protests. photo montage posted to r/disability on Reddit by u/NeuroCartographer
The U.S. Capitol. A floor plan which shows the central circular rotunda with the Senate Chamber on one side and the House of Representatives on the other. There are many side rooms, stairways and other features that are not clear on this diagram.
The sound byte from Jackie Speier is from an interview with Stephen Colbert, on The Late Show from CBS.Â January 28, 2021
Original air date of this program: January 29, 2021
Today we integrate some of the events of our nation into our disability routines.Â We’re nine days from an attempted coup at the Capital Building in D.C. as the pandemic rages and vaccine hope arises.Â 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.
UpComing Events in the Disability Community
Martin Luther King Jr Birthday Celebrations
Weekend of Jan. 16-17 Sonoma County Celebration, Sunday, Jan. 17, 7-9 pm (Look on-line for other celebrations in your area – many national and local celebrations are planned.)
What is Mental Illness or What Is It Not
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 9:00 PM PST Pre-registration is required.
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 yearâ€¦yes, there HAVE been delicious nuggets.
Also, a excerpt from â€œThe Advantages of Having a Speech Disabilityâ€ by Jacob Lesner-Buxton. (see 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. Round Table: Eddie Ytuarte, Mark Romoser, Sheela Gunn-Cushman & Adrienne Lauby
The Advantages of Having a Speech Disability
By Jacob Lesner-Buxton
â€œIf someone offered me ten million dollars, I wouldnâ€™t give up my disability.â€ 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 donâ€™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:
People care more about your actions than your words
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 â€œ 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 donâ€™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 donâ€™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 donâ€™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 itâ€™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 donâ€™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.
Donâ€™t try to force conversations
â€œYeahâ€œ, â€Uh-haâ€, and Wowâ€, 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 donâ€™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 isnâ€™t perfect. Some times I need to tell my boss something when heâ€™s busy and I prepare myself for getting an â€œuh-haâ€ and â€œok â€œ response from him. Other times people do want to talk, but they canâ€™t understand me so they do the â€œuh-haâ€ stuff. Often, they confess, that they canâ€™t understand and get someone else to translate or find a different way to communicate.
Once I was getting the â€œuh-haâ€ 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 didnâ€™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 â€œuh-haâ€ and â€œokâ€ 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 â€œuh-haâ€ and â€œwowâ€. While watching this interaction, I wondered if the man understood that his chatter wasnâ€™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 doesnâ€™t respond to my game in five minutes, then there is a good chance she wonâ€™t reciprocate my feelings.
When speaking falls try other methods of communication
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 donâ€™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 â€œhow to understand Jacobâ€, at least I can get my needs met by doing a bad Charlie Chaplin impersonation.
Having a speech impediment keeps superficial people away from me.
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 didnâ€™t appear to be nervous at our initial meeting, They also donâ€™t care about what others think which is helpful since people sometimes stare when Iâ€™m out in the community. From my speech to my gait, I know that I donâ€™t attract people who only want to associate with model types.
Even though it has taken me a while, Iâ€™m ok with not being the typical California pretty boy portrayed in the media. Moreover, I donâ€™t want to try to open someoneâ€™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 donâ€™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.
I can use my speech disability to be a bastard to others.
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 canâ€™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 canâ€™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 â€œI know you not going to understand what Iâ€™m about to say.â€ 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 couldnâ€™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 â€œcongratulations your child is disabledâ€ 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 â€œcongratulations youâ€™re disabledâ€ 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 studentâ€™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 arenâ€™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 peopleâ€™s backs, it might get them laughing. Their laughter, the corny celebrations, and the lists might exist in a society where taking pride in oneâ€™s disability is the norm, not the exception.
Jacob Lesner-Buxton lives with Cerebral Palsy and his essay titled, â€œThe Advantages of a Speech Disability,â€ 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-Buxtonâ€™s writing on his facebook page and through the Berkeley Disabled e-group list.
Less than 1% of U.S. residents live in nursing homes*, yet over 30% percent of all COVID-19 deaths has occurred in these institutions.Â 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.
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. Â She’s the mother of two, a member of ADAPT and a board member of Not Dead Yet.Â 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)
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″.
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.