“Solving Injustices Through the Means of Public Health”: A Story of Albinism and Advocacy

In the United States of Care, Catherine Jacobson tells her story of being born in South Korea with OCA1A albinism which caused her to be legally blind, being adopted by a family in Minnesota to a couple experiencing blindness themselves, and becoming an advocate for public health systems that make patients feel safe, dignified, and able to trust their providers.

Albinism

Albinism is a group of rare diseases in which patients have little to no melanin pigmentation, causing characteristically light skin, hair, and eyes. The type of albinism depends on the gene mutation that caused it, causing a range of light coloration for patients. The lack of melanin causes patients to be extremely sensitive to the sun and its harmful properties, as well as causing vision issues and possible blindness.

From South Korea to Minnesota

Catherine explained,
“The adoption agency knew it was more likely disabled parents would adopt a disabled child, but also believed it was better for successful blind parents to raise a blind child rather than sighted parents who are unfamiliar with blind culture and accommodations.”
Catherine’s adoptive parents, Steve and Nadine Jacobson, are both entirely blind, and both had achieved great success in their personal lives and careers. Her mother worked as a social worker and her father was employed at 3M for over four decades. Their personal experience navigating a world built for sight enabled them to guide their new daughter. She came to Minnesota when she was seven months old.
Catherine explained how her parents were fierce advocates for inclusive measures that her school could take that would enable her to have access to a better education.
“They worked with the school district to include braille lessons within my education, and they made sure I got equal treatment through accommodations and an IEP.”
Their shared disability was only one part of their support. They displayed a great commitment to her well-being, getting the necessary help when she was diagnosed with dyslexia, therapy when she became clinically depressed in adolescence, and making sure they were embedded in some of the local Korean cultural activities.
“They brought my sister and I to Korean culture camp to ensure we got a taste of our ethnicity, and they made sure my pediatrician was comparing my growth statistics to Korean charts and not just American ones.” – Catherine

Finding Her Path to Advocacy

The greatest gift was their lessons in personal advocacy, which taught Catherine to ask for what she needed to make her work and educational spaces accessible.  She said, “As I transitioned into my young adult years and into college, I quickly realized how privileged I was to have already obtained the skills and confidence needed to advocate for myself.”
In university, she began to recognize the role of her identities and how they shaped her world view. She said,
“I recognized that my race was not just the color of my skin, and that my disability, invisible or visible, was valid whether other people saw it or not. I found that I could be valued and confident in all my identities, but still know that I am not defined by any one of them.”
From here, she found her way into a major in social justice. Her second major came unexpectedly after a global health class showed her how inequity manifests in public health systems.
“I realized I could follow my passion of solving injustices through the means of public health to create social change. Thus arose my second major – Public Health Sciences.”

Public Health Meets Social Justice

While she had never envisioned herself heading down the policy direction, during her first summer of college, she received an internship at the National Federation of the Blind where she began her advocacy journey. The role was connected to many branches of government. She hadn’t known her first assignment would be through the Advocacy and Policy team where she learned about disability rights policy, and she conducted meetings at congressional offices in DC:
“I felt powerful walking through the halls of congress knowing that this is where change starts. This was when my excitement and hidden skills of policy advocacy presented themselves. I saw that policy can be an effective and direct avenue to making change.”
Her first taste of advocacy redirected her path forward, and she continued to gain experience in public health policy:
“Whether it was through experiences interning with the American Association of People with Disabilities, a county level public health department, a state-based health plan, or for the office of Senator Amy Klobuchar, I knew I had found my purpose.”
Catherine continued on to receive her Master’s in Public Health Administration and policy. From here she found a full-time position with USofCare.
“I was immediately inspired by our mission and vision; more specifically I was really attracted to the non-partisan aspect of the organization. It has been clear to me that more often than not everyone wants the same result— for everybody to have easy access, affordability, and trust within our health system.”

Why She Wants Change

Catherine described her own experiences with the health care system that showed her how even the medical world can be disrespectful. She described a time when she’d told a doctor she was blind:
“She grabbed my arm and pulled me over to the exam table, where she continued to move my body in any way she wanted with no warning or consent. She assumed a blind person could not take direction to be examined properly, and decided it was within her authority to do whatever she wanted with my body, as a body and not as a person. This made me feel inferior, harassed, and distrusting of the health care system.”
 She didn’t go back to visit medical services for a year despite being a student in public health herself at the time and knowing exactly how important health services are.
“My experience is not rare either. I see all over social media and hear from my friends with disabilities having similar experiences with doctors.”
All of this is only motivation for her to pursue this line of work to create a system that makes disabled patients feel safe and respected so they’ll feel comfortable.
“This organization doesn’t just allow me to bring all of my lived experiences and hats to my work, but they encourage and want me to.”

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