My doctoral dissertation (as yet unpublished...soon, I hope) considers the experiences of special education teachers who are parents of children with disabilities and how that dual role influences their pedagogy and relationship with other parents, teachers and their students.  My participants were all teacher-parents and about half had children with a disability and the other half did not.  What I found was that all were dedicated, invested teachers, but those who had the personal experience of disability within their family were able to use their experiences to advocate harder, tended to go the extra step to find solutions to meet the needs of their students and found their communication with others to be stronger and more effective, increasing trust and receptivity.  This was especially noted in those who had been teachers prior to the birth of their child with a disability and had experienced both roles.  

As my study is qualitative, it cannot be generalized to larger populations, but as personal anecdote--my mother died in April of this year from metastatic breast cancer.  She had a port in her chest for her meds.  In the emergency room, three weeks before she died, the nurse was going to flush her port.  My mother fussed at her, asking how familiar she was with the complexities of port management, saying she was "very protective" of her port due to the risk of infection.  The nurse said she understood as she had once had a similar port and had also been protective and that she would be very careful.  My mother was much reassured.  Of course, that doesn't mean that any other nurse would not have been as careful, but the shared experience was important.

My point?  Most health care professionals have not had the experience of the illness that they treat, except perhaps for pediatricians and female OB/GYNs, and that lack of personal experience, in itself, does not make them less of a practitioner, but having had the experience may help them to be more understanding and facilitate better communication between themselves and their patients/clients.

Kathy (retired IBCLC/LLLL, BSEd, MEd, almost PhD, special education teacher and mother of a young adult with a disability)

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