Saturday, May 30, 2020

What is Allyship? Why do people distrust the term?

What is Ally-ship? Why do people distrust the term?

Someone asked me this recently, given the word "Allies" is in the title of the book I've co-authored with Allison Carey and Richard Scotch: Allies and Obstacles: Disability Activism and Parents of Children with Disabilities, and I decided to expand on my response here. As I write this, there are protests happening all over the United States, a response to George Lloyd's murder by police, making this piece more directly relevant and urgent than I understood when I started writing this. I encourage people to go directly to the references, written by people of color and disabled people whose conceptual work and activism on these issues I am merely amplifying.

What constitutes ally-ship and why people have come to distrust the term is a distinction between words and deeds. Recent critiques I’ve seen online distinguish between allies who do things such as “like” and “share” progressive social media posts but don’t do anything else, versus those who are actively engaged. For example: by actively confronting people for racist behavior; staying with someone who is being harassed and confronting or documenting the harassment, and; joining in protests in supportive and responsive ways while deferring to movement leaders. Symbolic and passive expressions of ally-ship are not enough.

In the past, and certainly in many examples we discuss in our book, active engagement was considered an essential and inherent part of ally-ship. Recently there has been a more nuanced understanding of instances of hypocrisy, betrayal and misuses of the term ally-ship in social justice activist contexts. Harmful and exploitative expressions of transgressive transracialtransability, and terf practice in recent years has led to the need for more nuanced distinctions of how the use (or non-use) of power and privilege on behalf of others might (or might not) constitute ally-ship. 
There is also the question of whether ally-ship is even wanted at all in particular contexts, or is explicitly rejected. We discuss this explicitly in our book.There are people and groups who label themselves as allies and then do harmful things (autistic paaarents and Autism $peaks, for example). Since the term ally-ship has been so misused, people now distrust it. Words offered as replacements or alternatives to ally include co-conspirator, accomplice, comrade. These powerful words clarify intent, especially in moment of action, during tumultuous protests, where it is sometimes unclear who is acting in whose interests and why.
References Cited:

Saturday, April 18, 2020

People in Nursing homes, COVID-19 and Access to Intensive Care

As a disability studies scholar I am trying to understand some of patterns of life and death that are emerging from the COVID-19 pandemic, especially in relation to the precarities of long term care facilities such as nursing homes. The vulnerability of nursing homes was revealed in New Orleans during Hurricane Katrina where 100 nursing home residents died after being trapped or abandoned. New policies were passed following Katrina regarding the procedures for evacuation in an attempt to prevent similar tragedies from occurring. Though the pandemic is a different kind of threat, it is just as real and deadly as rising waters, and as with Katrina, the precarity of nursing home residents is once again being revealed in a time of crisis.

In March to April 2020, Pinecrest, a full to bursting 65-bed nursing facility in Bobcaygeon Ontario had 29 resident deaths a 44.6% mortality rate to COVID-19. The Life Care Center in Kirkland Washington in the United States was a facility with an estimated120 residents and had 37 deaths, a 30% mortality rate. The Life Care Center has now been fined over $600,000 and in danger of losing its license due to health violations found at the facility. At Residence Herron in Quebec 31 out of 150 residents have died so far, more than 20% mortality rate. One researcher, Nora Loreto, has found that so far as of mid-April over half the COVID deaths in Canada were in long term care or other types of residential facilities. In New Jersey, one nursing home asked for body bags on April 13th and it was found that 17 bodies were stacked in a tiny morgue meant to hold no more than four people.

At Pinecrest in Bobcaygeon, visitation at the facility was restricted on March 14th. The outbreak was reported to public health officials on March 18th by the nursing home administration. According to news reports, sick and healthy were not separated until two weeks later after 16 people had already died. The reason given by a staff at the home is that the home was too crowded to allow social isolation, with up to 4 people per room separated only by curtains. It was only when people began to die that space opened up to separate symptomatic residents from those who showed no symptoms: " ‘That's the reason why we actually have the space now. Because we've lost ... residents,’ said Sarah Gardiner, who has worked at the Pinecrest Nursing Home for 12 years.” (you can view Sarah Gardiner’s interview here). It is not just the residents of Pinecrest in Bobcageon that were endangered by the administrative decisions made from a distance. Over two dozen staff and volunteers from Pinecrest were infected with COVID-19 and one volunteer, Jean Pollock a spouse of one of the residents also died. Her husband Ted died a week later. An elderly woman Ruth Sheppard and her daughter with Down Syndrome, Tami Louise Sheppard (56) are among those residents who died at Pinecrest. When Tami Louis Sheppard’s father passed away her she was sent to live at Pinecrest because her mother could not care for her and then her mother eventually joined her at Pinecrest. A loving obituary for Tami Louise Sheppard can be found here.

Let’s step back and recognize that a 65-bed unit with bedrooms holding up to 4 people is far from an ideal long-term living situation. For anyone. Under any circumstance. It is not really a living situation at all, more like storage
Though many people move to residential facilities, urged to do so by family members, believing that such places are safer than their own homes, this is patently untrue. Just like any total institution as outlined by Erving Goffman in his book Asylums, such facilities limit individualized care, feature a lack of privacy, and increased vulnerability to physical and sexual violence. The increased risk of infection is merely one currently prominent sign of the vulnerabilities inherent in such institutional settings. In another layer of the structural inequalities of such places, the front-line workers are often face exploitationand unfair work conditions -- low-pay, given limited hours so the agencies don’t have to pay benefits. Capping hours below the levels where payment of benefits is required means that workers must work in multiple settings for multiple employers to make ends meet, extending the risk of infections as staff move between multiple facilities. Facilities with working and living conditions such has these are places particularly vulnerable to COVID-19.

Not only are some people in nursing homes not being given access to the hospital but less-acute patients are being released to long term care facilities to open up hospital beds, potentially exposing residents to people who have had COVID and who might still be contagious. This is also true of staff, who, at least at first, were being allowed to return to work after recovering but without any testing to confirm that there was no risk they might still be contagious. There has been some critique of the front-line staff, the ones who did not abandon the residents, the ones who worked crushing hours and experienced extreme understaffing – sometimes therewere as little as 4 people available to care for 60-something residents. Staff report they were not given appropriate nor sufficient protective materials and it is obvious there was inadequate leadership in this crisis situation until after far too many people had died. In addition, they faced backlash from people in the town – understandably frightened by the risk of infection but reacting initiating a kind of profiling. For example, in Bobcaygeon no one who was thought to have traveled abroad or worked in the nursing facility was allowed in the local grocery store. Someone from the store stood out front and refused admittance to anyone who they didn’t want to enter the store. Instead, a store employee was sent to retrieve groceries.

       "Immediately, we put someone at the front of our store, and we screen,” says Jessica    

       Strang, who runs the store with her husband Ken, whose parents owned it before        
       them.  “We ask them if they’ve been out of the country, near anyone who’s been out of 
       the country, or if they’ve been in contact with anyone from Pinecrest. And we got 
       backlash, saying, you can’t discriminate that way. And my defence (sic) there was, if 
       appropriate PPE (personal protective equipment) had been used, half their staff 
       wouldn’t have it. And it’s unfortunate, and it’s not their fault. But I am going to do 
       everything in my power to protect my staff, and my community that’s shopping in the 
       store. And that’s just how it is. I’m a firefighter. I run into medical calls myself, and we 
       have very strict PPE protocols in place. We have plenty of EMS and firefighters and 
       nurses who shop in our store. I’m not denying anyone. Unfortunately, Pinecrest did not 
       have those protocols in place. If someone from Pinecrest comes here, tell me what you 
       want, I will go in and shop it personally for you, and bring it to wherever. Call me."

Some of community members interviewed want to find someone to blame, and they call for investigations and inquests: “’Somebody brought it in from somewhere,’ said Pat Dunn, a City of Kawartha Lakes councilor.” Others focus on the extraordinary commitment of the Pinecrest health care workers and strategize best ways to support and help them and to advocate for better care and resources for residents and front-line workers. For example, City of Kawartha Lakes Councillor Kathleen Seymour-Fagan said “The PSWs and nurses that I’ve spoken to said there’s going to be PTSD afterwards because it’s so stressful,” she says. “It was such a mess because there was no staff there.” Miranda Ferrier, the president of an association representing personal support workers, emphasizes that staff needed training on presenting spread of infection but were not given adequate equipment. However, Pinecrest administrator Mary Carr stated that Pinecrest staff had proper protective equipment from the very beginning: “All staff, especially new team members, have been trained and oriented on the correct use of personal protective equipment (PPE) and our home has been fully stocked with PPE from day one. I want to thank our staff for being diligent and prioritizing the health and safety of our residents.” Whatever the status of protective equipment and it’s use, it is obvious is that the facility was severely understaffed during much of this crisis and this led to inadequate care for critically ill residents. Pinecrest eventually received outside assistance to ensure including extra staffing as from contracted workers from an agency called Extendicare Assist.

This leaves so many questions. Why were sick people not removed from the facility either to a hospital or even to a temporary hospital space that could have been erected outside the facility? Why was the attending physician advised not to go to the nursing home in person? ( you can see his interview here) Why were none of the residents ever removed to a hospital that would have enabled them to receive critical care including ventilation? In his interview, the attending doctor said the only thing that could be done was make people comfortable during their last days, but this is obviously not true, there were lots of things that could have been done to try to keep people alive. Removal to a hospital, intubation, and ventilation would be terrifying to someone with dementia, but isn’t this true for anyone no matter what the age and cognitive? Isn’t that what those medications “to keep people comfortable” can be used for? To tranquilize people and minimize anxiety? We are seeing images all over the world of elderly people recovering and leaving hospitals. Why were the residents of the Pinecrest being refused hospital treatment that could include resuscitation? Why were family members of people in Pinecrest told that hospitals had nothing to offer their loved ones? Why in other parts of the Canada are people being informed they are being preemptively denied the right to hospital treatment? One family in Calgary was told by the doctor that if their elder got sick “ ‘She would be denied emergency transfer in the event that she was deathly ill from COVID,’ ... ‘She would be denied access to an ICU. She would be kept in the care facility and treated to the best of their abilities there.’”

Pinecrest medical director Michelle Snarr: “emailed families on March 21, warning them they may have to decide on sending a loved one to the hospital or placing them on a ventilator — the latter of which Snarr said would likely cause a patient to ‘suffer a great deal,’ adding that they ‘may not survive.’" This is not a value-neutral statement, but rather one that appears to be discouraging family members from moving their loved ones to hospitals. Even though ventilation is certainly scary and uncomfortable, why was it was presented to family members as being something scarier than death, making the choice to fight for a loved one’s life equated with causing extreme suffering and emphasizing that that suffering would likely be in vain. I do not mean to minimize the risks or the realities of the questionable efficacy of ventilators for many COVID-19 patients. Most people with COVID-19 who are put on ventilators do not survive. Some would not survive and some may survive but be unable to exist without a ventilator in the future. It is also true that the quality of life of even those who were extubated may not be equal to life before experiencing ventilation, but again this is something that would vary according to individuals and should not be presented as the same blanket truth to all. Note that the people describing life on and after ventilation have not personally experienced either of these things and there are thousands of people who live their lives, sometimes for decades, while ventilated. Research has shown that nondisabled people, including medical professionals consistently underestimate the quality of life that disabled people experience. The notion that a life with ventilation is not worth living is an ableist imaginary, not something based on the actual experiences of people who use ventilators.

Why are elderly people and family members being told something so patently in contradiction to medical ethics and legalities of care? If people are not requesting Do Not Resuscitate orders (DNRs), indeed if people are refusing DNRs, why are they preemptively being refused care? This has been documented as occurring in both Canada and England. It has been threatened in the United States as well. In England people are getting letters letting them know that, should they need it, they will not be granted critical care. In the US, some states have announced their intentions to implement such policies but the Department of Health and Human Services warned medical professionals that this was an ethical and legal violation.

This has been referred to as medical triage but this term is misleading. Triage is defined as something that happens in emergent or battlefield situations where doctors assess patients one by one and make individual decisions that seem best at the moment based on resources available at the moment. This is something that has been reported to have taken place at the high of the pandemic curve in Italy and Spain. However, telling people who are not even sick that they will not be allowed access to a hospital or critical care or refusing to transport sick people who did not sign a DNR to hospitals is not triage. If it is not an individual or a designee making an individual decision about a single life – If it is an administrative decision being made at a distance and in advance to decide who deserves a chance at life and who does not. Then it is not triage or even rationing. It is social engineering -- It is eugenics.

Acknowledgements: My thanks to Mary Egan, Ravi Malhotra and others who don't wish to be named for their comments and suggestions.

Wednesday, April 8, 2020

Michael Matusow June 22, 1949 – March 31, 2020
I learned early in the morning on April 1st that I had a relative by marriage, a relative I hadn’t realized existed. My cousin Dan posted the sad news on Facebook along with a photo of the two of them together.
Michael is sitting in a chair and covering his mouth, Dan is smiling, crouching down, with his arm on the chair or Michael’s back Perhaps at some point in my adolescence or early adulthood I was told about him, but I don’t remember. His name was Michael Matusow and he was born June 22, 1949 and lived in a private family-run institution in Delaware called Van Hook since he was 7 and in a state institution New Jersey called New Lisbon Developmental Center from 1990 until his death. Van Hook (later called Van Hook-Walsh) was a small private family-run school.
I don’t know much about Michael. I’m told he had an intellectual disability and very high support needs, that something happened when he was born that likely would not have happened today. I’m told he loved the song Yellow Rose of Texas. I have pictures of him as a little boy. In a picture I have from the 1950s he is at Van Hook, sitting on top of a picnic table out in the sun with his older cousin Howie then (my uncle Art’s older brother) and his mother Helen. Helen looks beautiful and young, has on sunglasses and is looking at Michael. Michael and Howie are looking at each other and smiling. Michael’s mother’s arm is held protectively around him. The only people that Michael’s parents allowed to visit were his sister Alice and his cousins Howie and Art.
In the 1990s he moved from Van Hook to New Lisbon to be closer to his mother who had moved from Philadelphia, Pennsylvania to Ventnor, New Jersey. Michael’s mother established formal guardianship which allowed him to move to NJ and from a small private school to a large state institution: living first Teabury in New Lisbon (which Art never liked) and then to Knoll Manor. I have another picture of him and his mother in 1990. He is about 40 and his mother 75. They are sitting very close together on a couch. Her arm is around him here too and she is kissing him. He is looking down at something (a toy duck?) that he is holding in his hand.
My uncle Art and his 2nd cousin Dan (who is my friend) have been Michael’s joint guardians for the past 10 years, now that his mom (Art’s aunt and Dan’s grandmother) and his sister (Dan’s mom and Art’s 1st cousin) are both gone. They promised Michael’s mom they would visit him once a year, for Michael’s annual support plan meeting, which they did faithfully. His father Icky (a family endearment, his legal name was Isadore but most knew him as Ed or Edward) called him the handsomest of the Matusow boys of his generation, with the thickest head of hair, that he kept as he aged.
          I don’t know the process by which it was decided to send Mikey (as he was then called) away when he was 7. It was common. If you consulted certain doctors, they would recommend sending such children away for the good of the child and the rest of the family. I don’t know why his parents decided he should stay in an institution in the 1980s and 90s when most people, no matter how high their support needs, were moved into community residential placements. I know there were parents in Pennsylvania, New Jersey and other parts of the country that organized to keep their children in institutions which were considered safer or better in some way. I don’t know what life at New Lisbon was like, though I do know Art and Dan were asked every year in the annual meeting about the possibility of community placement, and they declined out of respect to Michael’s mother’s wishes. I know New Lisbon was founded in 1914, and so has a long history. I know what the experiences of institutionalized individuals were like in the aggregate (statistics of mortality rates, experiences of violence etc.) and from narratives that people have written, (like Roland Johnson’s book, Lost in a Desert World that these places were generally not as safe as families thought, but this could vary according to the type of institution (public vs. private for example) or the philosophies that those who ran them employed. New Lisbon is a state-run facility, likely with a mostly aging population with complex medical needs.
New Lisbon Developmental Center, founded in 1914, is home to 463 developmentally disabled men and women. Using a philosophy called "Functional Lifestyles," it is completely dedicated to providing active treatment services within the context of a person-centered planning approach.
Residents live in cottages that maintain a home environment which reflects the interests and preferences of the individuals who live there.

Michael died at age 70 and he did have complex medical needs including a feeding tube and a ventilator. Seventy is quite an advanced age for someone who has spent his life in institutions. He has been in and out of the hospital for the last six months, but this death was quite sudden and COVID-19 was suspected. Michael and New Lisbon both exactly fit the demographic of the long term care facilities whose residents would be most vulnerable to COVID, and according to news reports COVID is in at least a quarter of these facilities in New Jersey (93 out of 375 facilities and 1/5th of the 355 fatalities as of April 1st) . Underpaid front-line workers, who often must work multiple jobs to make ends meet, can unknowingly pass illnesses from facility to facility. However, Art and Dan were told the test came back negative. He did not die from COVID, his body wore out, conditions exacerbated, as often happens when people with vents and feeding tubes begin to be “frequent flyers” from residential facilities to hospitals and back.
          I don’t know what makes me sadder: that I have a disabled relative who I didn’t know (or forgot) existed; that he died without me ever knowing him; that he lived almost his entire life in institutions; that he died during a time when the health care system was stressed due to COVID-2019, even if it was not his personal cause of death; that the exploitation of under-paid front-line workers is likely a factor in the spread of the COVID-2019; that hospitals and policy-makers are talking about or actively engaged in triaging people like Michael as people who should be classified as DNR (do not resuscitate) because the quality or quantity of their lives are not considered worth trying to save.  According to Art, Michael received exceptional care in his final medical crisis, and he did not have a DNR order. The medical team just could not bring him back from a sudden high fever and his body quickly shut down, much as happened to Nick Dupree. However these conversations about end of life decisions are happening all over the world and also in New Jersey. I am left wondering, what were his last moments like? Was there a shortage of supplies or staffing due to COVID-19? Who was with him when he breathed his last. Was he alone?
There will be no funeral. As all families are at this time, the choices are burial or cremation. His mother's wishes were that his body be donated for scientific research, but that was not allowed due to COVID. So, he was cremated on April 3rd and his ashes will be buried in a plot at New Lisbon. No gathering of family. No shiva. No funeral. With the travel restrictions of the COVID-2019 crisis, Michael’s surviving family currently have no options of mourning Michael together, though they hope to have a memorial gathering once the restrictions have lifted. In times when I am helpless and have no other choices, I remind myself that the very least I can do is bear witness. So I do. I had a cousin via my uncle Art. He was named Michael and he lived and died apart from his family. He had a very sad life, followed by a very sad death. And he deserved none of this. He is one of thousands, soon to be tens of thousands, hundreds of thousands. Let their memories be a blessing and let us fight to keep every one of them with us for as long as possible and not decide that age or disability status means different levels of treatment. Life worthy of life. Life worthy of life. I bear witness.

Acknowledgements: Thank you to Arthur Matusow, Dan Kohn and Howard Matusow for reviewing drafts to ensure accuracy and to Marty Matusow for her help as well.