Wednesday, April 8, 2020

Michael Matusow June 22, 1949 – March 31, 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.


  1. I bear witness there but for fortune................ I was born and grew up in the Northeast too. I turn 70 next week. I am fine except for too many hours of typing ........... For now I need no care but love. Inshallah.

    Shalom Michael

    1. Thank you Devva! My students are reading your parts of the Occupying Disability this week -- the chapter with Neil and our discussions and conclusions chapters.

  2. Sad, beautiful reflection Pam; powerful too.