How a Patient Advocate Could Have Changed Helen Keller’s Journey

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When Helen Keller fell ill at just 19 months old, her world became silent and dark. Struck by an illness that left her both deaf and blind, Helen’s family faced an uncertain path. In the late 1800s, resources for children with disabilities were scarce, and her parents were left to navigate a confusing and often unwelcoming medical and educational system.

This is where a patient advocate could have made a difference.

Early Childhood Support

A pediatric patient advocate could have helped Helen’s parents understand the medical complexities of her condition, research emerging therapies, and connect with the few specialists and educators who were beginning to study childhood deafness and blindness. Instead of struggling alone, the Keller family could have had guidance in identifying opportunities for Helen’s growth and independence much earlier in her childhood.

The Transformative Role of Education

When Anne Sullivan entered Helen’s life at age seven, everything changed. Anne’s persistence and innovative teaching methods opened Helen’s world through touch, letters, and connection. A patient advocate could have supported this milestone by helping the family secure funding for Anne’s role, coordinating educational resources, and advocating for Helen’s right to attend school — a right often denied to children with disabilities at that time.

Transitioning into Adulthood

As Helen grew older, she achieved what many thought impossible. She attended Radcliffe College, became a published author, and traveled the world as a speaker and activist. Yet each of these steps came with obstacles: inaccessible books and materials, logistical barriers, and deeply rooted societal prejudice. An adult patient advocate could have helped secure accommodations, arranged access to interpreters and assistive technologies, and ensured that Helen’s educational and professional opportunities were not limited by systemic barriers.

The Broader Impact of Advocacy

Despite the challenges she faced, Helen Keller became one of the most influential figures of the 20th century, a tireless advocate for people with disabilities, women’s rights, and social justice. But her path could have been made less burdensome with an independent patient advocate by her side from childhood through adulthood — someone to navigate systems, remove barriers, and keep her voice at the center of every decision.

Helen’s story reminds us of the power of advocacy. She proved that no diagnosis or disability can silence determination, but she also highlights why patient advocates are so essential today. Advocacy ensures that no patient or family has to fight alone for access, dignity, and opportunity.

LORI IS EXTREMELY TALENTED!

What a great use of Lori’s talents!

I worked with Lori for several years during my career as an orthopedic surgeon. I know her to be not only compassionate and understanding but also a tireless advocate for what is right.

In difficult situations she was unwavering in her quest to enable me to provide the best possible care for my patients. She knows the system and how to work through it (and around it whenever necessary

LORI JUMPED RIGHT IN

If you are in need of a patient advocate, I would highly recommend Lori Schellenberg. She is extremely knowledgeable, effective, and professional. Knows when to be strong and forceful yet loving and caring with your loved one and your family. I was concerned about an elderly family member who had several severe falls, was forgetting to take medication, not eating healthy and not keeping up with housekeeping yet insistent she was fine and staying in her home. Even though Lori lived out of state she made phone calls on our behalf, made several recommendations to help us provide what our loved one needed and was an intermediary when it was necessary. Lori’s knowledge of geriatrics, continuous care/assisted living facilities, the health care system, long term care insurance and hospice is invaluable. She helped us put together a plan that provided the best and continuous care necessary for our loved one and our family. We are extremely thankful for her help and look forward to continuing to work with her as our loved one moves through the next phases of her life’s journey, thus enabling us to create loving memories.

LORI JUMPED RIGHT IN

My husband underwent nasal surgery 6 months ago, after he had a negative sleep study test and was referred to an ENT doctor due to continued fatigue and snoring.

Unfortunately, he developed two different serious infections, and we were concerned about his ongoing treatment with the ENT. In fact, we were very anxious because he wasn’t getting better but the surgeon was not clear with us as to what to do next.

When describing what was going on, Lori jumped right in, when she found out my husband was actually at the surgeon’s office at that time, and still did not understand the situation. She recommended that my husband ask to have the surgeon come back into the room, and to call her so that she could speak to the surgeon with my husband in the room. Lori was very professional and knowledgeable in her approach with his surgeon. She established a treatment plan, in a way that my husband could understand, and why this was the plan. She also discussed the “what ifs” the current treatment plan did not work. He ordered further tests to be completed prior to his next appointment, if he did not improve.

She followed up with my husband and I to make sure we understood the plan.

By advocating for my husband, Lori relieved a lot of anxiety and stress that this current medical concern was causing, and they felt more confident in the surgeon’s care.

We highly recommend Lori and Stepping Stone Advocacy Services, if you are experiencing a medical condition, and don’t know where to turn for answers. She is experienced and professional, yet able to discuss medical terms in a way that we understood.