My name is Domonique Howell, a mother and a disability and family advocate from Philadelphia PA. My passion for advocacy truly began when I conceived my daughter. Unfortunately, during my pregnancy I experienced subpar prenatal care, medical disparities, and discrimination because the family practice and other practices at the hospital lacked accessibility and the proper knowledge to care for patients with disabilities, especially pregnant women. Some of the hurdles I experienced included but are not limited to proper OBGYN examinations and the inability to get weighed because there weren’t any wheelchair accessible scales.
The lack of access and subpar treatment led me to advocate for current patients including myself and other patients with disabilities of the future by writing letters to the directors of Obstetric and Family Medicine practices explaining their shortcomings when it came to caring for patients with disabilities and the importance of accessibility for all patients. Even with the hospital paying attention to my diligent advocacy, the battle was not over. At six and half months pregnant, I experienced severe numbness in all of my extremities which in turn led me to hospital bed rest for the duration of my pregnancy and the birth of my daughter. It was there while inpatient, I experienced disability discrimination. My diagnosis is spastic cerebral palsy with limited use of my lower extremities which means that I am a full-time wheelchair user. It is with this disability that the medical professionals assumed that I would not be able to physically take care of my child. The medical professionals decided to take the information from the classic textbook case of cerebral palsy and make medical recommendations for my child and myself. The problem with this beside the obvious ableist mindset is that not one of these medical professionals knew me prior to pregnancy, so they had no idea what my physical baseline was. With their discriminatory medical recommendations, the department of human services were called and thought it best that my child be taken from me at birth and put into the child welfare system. Thankfully, I was able to self-advocate and have informal support in order to stop this from happening. I am proud to say that overall my advocacy efforts did not go unnoticed within this hospital system. Within a two-year period after my pregnancy, the family and obstetrics practice now has a wheelchair scale in their offices and lower exam tables.
While all this was happening to me, I asked so many different agencies and organizations for support but found none. I then decided to give birth to not only my daughter but to Momma Chronicles Too, a support and advocacy group for mothers and women guardians who have disabilities or who have disabled children. Our mission is to support each parent and child; to advocate while experiencing discrimination and disparities. We not only want to support each other but to also give back and pay it forward to the communities we are a part of.
Since its inception, Momma Chronicles Too advocacy efforts have focused on connecting and educating medical, child welfare, and government systems about disability diversity, equity, and inclusion on every level. I want to continue to call to action city and state officials across Pennsylvania and the U.S. to rectify the inhumane and subpar medical treatment and discrimination that so many people with disabilities receive daily in the US, especially parents.
Did you know that as of 2020, an estimated 4.1 millions of parents in the U.S. identify as having a disability? Also, as of 2020, between 40 and 80 percent of parents in the U.S. who have intellectual disabilities lose custody of their children.
In the medical research article: ‘Physicians Perception of People with Disability and their Healthcare’ (published in February 2021) there were 714 U.S. physicians surveyed. The research data showed that only 40.7 percent of physicians were very confident in their ability to provide the same quality of care to patients with disabilities and only 56.6 strongly agree that they welcome patients with disabilities into their practices. However, the most alarming result in my opinion is that only 18.1 percent strongly agreed that the healthcare system often treats patients with disabilities unfairly. If you think about these numbers and the fact that every US physician was not surveyed, you realize even with all the advancements in medicine, they are still light years behind when caring for patients with disabilities! Dr. Lisa Lezzoni, who contributed to the article mentioned above, has also said that women with disabilities are 11 times more likely to die at childbirth! It is because of these staggering statistics and my own experiences that my goal is to not only help educate systems but also to help parents with disabilities learn how to navigate and self-advocate getting their needs met and that of their children while offering support and resources.
In closing, I challenge you, the reader, to ask your medical professionals about their disability accessibility and accommodations for their patients.
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