Max wears a grey shirt and sits in the grass

Right to Live?


Tragically, many innocent victims of gun violence die.  Local news usually briefly reports the victim’s name, age, and the locations of the shooting and death or injury. 

Starting July 1st, 2021, the news ran non-stop reports on a man, who was shot in the back of the neck by a stray bullet on a public L train.  Why this media frenzy?

Max Lewis, a 20-year-old rising third-year student at the University of Chicago was shot riding home from his summer internship. Max was paralyzed from the neck down, not expected to be able to eat or walk again and would be permanently on a ventilator, according to his mother, Dr. Rebecca Rivkin, an internal medicine physician.  

Max was alert in the hospital.  No longer able to speak, Max spelled out on a letter board for his family, “If I have to live like this, pull the plug please. Seriously.”

On July 4th 2021, Max was taken off life support.

As someone with a disability with friends who are on ventilators and friends who are non-verbal, I see the real tragedy as Max not seeing a life with a disability as a life worth living and his family, including his mother, a medical doctor, complying with his request to be taken off life support.  This suggests that the family agreed that it is better to die than live with a disability.

I admit living with a disability can be hard with discrimination, inaccessibility, and societal attitudes limiting what we can and cannot do.  But that is not to say people with disabilities lack value and cannot have a good quality of life.

I wonder how many people with disabilities Max and his family knew.  Did they know of the technology available to make life easier for Max, like eye gaze that allow users to type and speak with their eyes?

Did he get any counseling?  Were the 3 days after his injury enough time for him to process his new disability and make an end of life decision?  These questions were asked when Million Dollar Baby (2004), a movie with a female boxer who also ends her life after becoming paralyzed, was released and disability groups, like Not Dead Yet, boycotted it.  Me Before You (2016) is another movie on this topic.

If one proves oneself before acquiring a disability, it seems easier to be accepted and accommodated.  Since Max was successful in school and at a financial internship before his injury, I’d guess he would have had an easier time navigating employment compared to another person with a disability who lacked those experiences.

Although I cannot imagine being in Max or his family’s position, I feel that in choosing to end his life, Max was a privileged young man with a bright future who rejected a life with less privilege and more challenges.  I wonder if a 20 year-old man of color from a low-income community was in Max’s situation and expressed the same wish to die, would it even be considered? 

With recent “rationing of care” during Covid, I feared people with disabilities would get pushed out of hospital priorities, only treating those most likely to survive.  Even pre-Covid, I struggled getting treatment; doctors refusing to see me, saying I should find specialists who treat people with my disability, which there are few to none.

My fears came true with Michael Hickson, a 46-year-old African American quadriplegic who had COVID-19.  He died on June 11, 2020.  The hospital ended treating him, despite his wish to live.  They put him in hospice, denying potentially lifesaving treatment of intubation and a more powerful ventilator.

A doctor told Michael’s wife that they decided to stop treatment since he lacks a quality of life from being paralyzed.  This begs the questions: who gets to decide what one’s quality of life is, are doctors in a poor position to determine quality of life if they are only basing it on medical book diagnoses, and are they playing God when they do?? 

If Max became blind or amputated instead, would there be no end of life discussions?  Where is the line drawn and who decides it?

By accepting the terms of Max Lewis’ death, society agrees people with disabilities lack lives worth living, further perpetuating biases against people with disabilities, which consciously or unconsciously keeps creating barriers on us.

Esther Lee

Esther S. Lee is an attorney with a disability affecting her speech and mobility, but not her spirit. She opened Disability Law Collective, an affordable law practice providing legal advocacy for the everyday legal needs of people with disabilities and their families. She also started a non-profit housing cooperative for people with and without disabilities, called Able Community.