The Courage to Live

Disability activistsHer name was Elizabeth, she said, but people called her Ellie. She had a beautiful smile and warm brown eyes. As she spoke, I noticed her auburn hair glistened under the neon lights of the shopping mall.

She was about my age, in a wheelchair, pretty, and she seemed interested in me. Cool! I thought.

This must be my lucky day!

I had been in the mall going to the bank and was about to stop for lunch. Observing my aide’s clumsiness with me as she helped me put on my coat, Ellie rolled up in her bright red power chair and confided to me, “You need to be firm with your home attendants, or they’ll take advantage of you.”

She swooped in front of me and directed me to follow her. I pushed the joystick on my midnight blue Invacare and rolled after Ellie to a restaurant with an orange neon sign outside that said “Master Wok.” Inside, there was a black and silver buffet table filled with steaming food, behind which stood several chefs wearing white uniforms and hair nets and clutching silver serving spoons.

I noticed an attractive young lady with long brown hair neatly arranged in a bun seated at one of the tables. I watched as Ellie slowly inched her chair up to the table where the young woman was eating a plate of fried chicken wings. I learned the young woman’s name was Ashley. At first, I thought she and Ellie were friends, but then I heard Ashley call Ellie “mom.”

Ellie Ramos and I talked for half an hour at our first meeting.  I knew her 14 years, and each of those years, she fought a fearless struggle of continuing to live her life as best as she could.

I learned a lot of tips and tricks about living with a disability from her.  She knew a lot about Access-A-Ride, for example. She was a veteran rider. She knew several drivers who took her back and forth to her hospital appointments by name.

Ellie was a regular at New York–Presbyterian Hospital—kidney stones a few years ago, pneumonia a couple of times, traction for a badly broken leg for a month.  I went with her once when she was being fitted for her new chest shell. Ellie used a white ceramic Cuirass shell that went from her neck to her hips for sleeping. It had a gray flexible hose midway for breathing and a pump at her waist that helped expand and contract her chest.

“This girl’s a trooper!” I always said. She was certainly my heroine.

I remember the early days of our relationship, when she lived on Jerome Street in Brooklyn, we were just happy to have each other. Looking back, I realize how fragile our time together really was. I told myself, “You’re lucky to have her, savor every moment you have together.” Neither of us was very healthy. Knowing this, we rarely wasted time together. Instead, we would find something to do. It really didn’t matter where it was, as long as we were together.

Ellie was a tireless advocate, always ready to speak up for the disabled. She was a board member along with me at Disabled in Action (DIA). She was also on the advisory board at Concepts of Independence, an organization that supports consumer-directed personal assistance for people with disabilities. Ellie did volunteer work at Concepts also.

Another organization she volunteered at was the Brooklyn Center for Independence of the Disabled (BCID). We attended several court hearings with BCID at 200 Worth Street in support of the Taxi and Limousine Commission’s controversial—but, important to us, accessible—Taxi of Tomorrow.

Lately, we had been working with the Civics League for Disability Rights, writing letters to the governor and state department of health, urging them to protect the services of ICS members like ourselves from a plan to consolidate managed long-term care in order to save money.

Ellie had moved from Jerome Street to live with Ashley, now grown up and on her own, at Starret City, a big complex in Brooklyn. It was there last summer, during a heatwave, that the unthinkable happened.

Besides her Cuirass shell, Ellie also used oxygen and a respirator to help her breathe at night. On the hot night of July 29, at 5:00 in the morning, Starret City, which had its own power system, experienced another in a series of blackouts residents had complained about for years. This one lasted five hours. Ellie’s electric respiratory support system stopped working and she lost consciousness. Ashley tried to revive her mom while she waited for paramedics from the New York Fire Department to respond to her 911 call. Ellie died before they arrived. She was 57 years old.

The next day, the shocking story of Ellie’s needless passing was in the news, all over the Internet. Knowing how much her life and her death affected others did not make my own sorrow any easier to bear.

I miss her terribly every day. She was my best friend—the best friend I ever had. I learned so much from her, but more important, I enjoyed life with her. She gave me my own courage to live

William “Bill” Clarke is a disability rights advocate and ICS member who lives in Brooklyn.

1 reply
  1. Marvin Finkelstein
    Marvin Finkelstein says:

    This is a great story of courage in the face of adversity. It is leaning me towards the right though the most difficult direction in an important life decision

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