NBDC Library
Black Maternal Health: A Mother's Story
My daughter arrived with much ado! She was born during a snowstorm. The beginning of the storms that throughout our lives would continue to get in our way. Upon going into labor at nine months I phoned my doctor, whose response and directives were questionable. On the way, during the 45-minute drive to the hospital, the car slipped and slid, finally reaching the emergency room.
My Memory is long. When I reached the hospital, I was taken to a hospital room, not a delivery room. It was my first childbirth, so I had no history of what to expect. That night throughout the next morning, many doctors came in to examine me. Some in teams, some, one by one, all while I was having painful contractions. I was taken for x-rays and repeatedly told "not to push." I remember being embarrassed for screaming as I was pushed through the halls of the hospital from one examination and x-ray room to another.
When my daughter was finally born some many hours later, I was told that the baby was “a little big for me” but they did not use forceps. After several hours passed, I asked to see her and was told that they were working on her. I then demanded to see her. A kind nurse took me to the nursery where I saw her for the first time. My daughter was having seizures and was attached to wires which I later learned was an electroencephalogram (EEG) that measured brain activity.
Another doctor came to see me later that day and said that they were not sure that she would make it and I could have Last Rights if I needed them. For the remainder of my stay, I was pretty sedated. Throughout the delivery and her subsequent seizures, I only heard from the assigned pediatrician from the hospital. I never heard from my doctor again. My doctor did not deliver my baby.
I was discharged 4 days later. A friend whose cousin was an RN in a different department of the hospital sent a message that I should look into what happened, some things were not right. She said that was all she was going to commit.
My baby remained in the hospital for an additional week. She came home with anti-seizure medication, a bright smile, chubby hands and body and a propensity to sleep. Over the next weeks I could see she was a happy, happy baby that responded to any kind of stimulation.
Shortly after my daughter came home there was an article in the paper that my doctor and her husband, who was a cardiologist, had lost their license to practice in our state. The lack of care, communication, and attention to me all made sense.
During this time, I waited for her birth certificate to come in the mail. It never came. I called the city birth records and was told they had no record of her birth. I went to the hospital and was given documentation of her birth. I was given daily charge records signed by the doctors. I am sure this was a mistake. On one piece of paper was written “Living Child….?
”I took my baby for her first wellness check at the pediatrician’s office who was assigned to her care while she was in the hospital. Without inquiry to if I was alone the doctor said to me, “I don’t know what to tell you, usually these babies only last a couple of years.” I listened attentively and left the office sobbing as I drove home. This would not be my last time doctors sent me home crying. Not because of the news but the manner in which it was given.
My intention was to get through the next several years, month by month, in keeping my daughter alive. My daughter was diagnosed with quadraplegic cerebral palsy with speech impairment. I had no time to think about a lawsuit or investigation into the hospital. This was the beginning of understanding how “some” doctors treat all their patients, or single moms, or Black women. Take your pick.
NBDC 2024 Survey:
NBDC conducted a survey in 2024 asking Black disabled adults about their experiences
and feelings on isolation and loneliness. The results fell into four areas.​
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Bias and Stereotypes:
Many people have negative stereotypes about disability, they see it as a limitation or a burden. We
are seen as different and could not have anything in common with non-disabled people.
Social Status and Societal Stigmas:
Families whose identity is based on social and financial upward mobility have little to do with disabled
family members whose growth is limited because of disability. By socially interacting with a disabled
person, you bear witness to the how disability impacts the individual’s life in every way. Family
members and friends would much rather not know. It speaks to out of sight, out of mind.
Extra Effort:
Socializing with a disabled person requires too much effort. Some people feel that interacting with a
disabled person requires understanding, and physical assistance which they are not willing to put the
time in. Family members and friends are reluctant to assist in social interactions, therefore it is easier
not to be in the presence of the person.
Lack of Education:
Not everyone is familiar with different types of disabilities or how to interact with people who have
them. People are uncomfortable around us. Fear of saying the wrong thing. People avoid
conversations because they worry about using inappropriate language or making assumptions
about disability.
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People with significant disabilities historically have been at a high risk of social isolation from family
and friends. Social isolation can have lasting and severe consequences for a persons health. It can
increase anxiety and mental health issues, and lead to feelings of loneliness, low self-worth, and
being unwanted.
A Tale of Two Daughters
By Jane Dunhamn
Diane Lillian Basie
Diane Lillian Basie was born to Count Basie and Catherine Morgan Basie on February 6, 1944.
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Diane was born with cerebral palsy. Count Basie and Catherine were advised by doctors that she would never walk and that she should be institutionalized. The couple kept Diane and cared deeply for her, and especially through her mother, Catherine’s, efforts Diane flourished, learned to walk, swim and enjoy many activities.
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Catherine became an advocate for children with developmental disabilities and participated with various organizations such as United Cerebral Palsy, Salvation Army and Lighthouse for the Blind.
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Diane lived at home with her parents and caretakers until her death on October 15, 2022, at the age of 78 years.
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Harolyn Suzanne Nicholas
Harolyn Suzanne Nicholas was born to Harold Nicholas and Dorothy Dandridge on September 2, 1943.
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Harolyn was born with severe brain damage. Harold Nicholas refused to financially contribute to the care of Harolyn, Dorothy raised her as a single parent. Harolyn was supported by her mother’s love and hard work.
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Most often Dorothy was on the road entertaining to make a living. Harolyn was raised by in-home caretakers while Dorothy was on the road. Ms. Dandridge encountered problems with some of the caretakers which was additional stress to the financial responsibilities of raising Harolyn and the cost of her disability.
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In 1963 Dorothy made the wrenching decision to send Harolyn to a California state institution, Camarillo State Hospital. She was forced to sell her Hollywood home and shortly afterward suffered a breakdown.
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Harolyn remained institutionalized and died in 2003 at the age of 60. There is no record of visitors or anyone claiming her body.
DEINSTITUTION
Olmstead
Unfinished Business
June 22nd was the twenty-fifth anniversary of the Olmstead Decision passed by the US Supreme Court in 1999. The Court held that individuals with intellectual disabilities have the right to live in the community rather than in institutions.
Twenty-five years later, only seven states have closed all their institutions which are called developmental centers. This begs the question why is it taking so long for advocates to convince states to close institutions?
NBDC Assists SWOT Team
