Progressive (dis)ability: the experience of living with Charcot-Marie-Tooth disease

This thesis is an Interpretative Phenomenological Analysis of the experiences of six women living with Charcot-Marie-Tooth (CMT), an inherited degenerative neurological condition with a range of debilitating symptoms. It is the first ever in-depth qualitative study into the lived experience of CMT, which is relatively common yet largely unknown. This is “Paradigm II” disability research (Olkin, 1999) that listens to the voices of those with disabilities to advocate for improved conditions, services and status in the world. Those who are disabled are empowered to speak for themselves. The researcher, too, has CMT and another progressive neurological condition, Parkinson’s. The women’s stories are analysed alongside his own autobiographical narrative.

Four themes are identified and discussed, drawing on literature from across the fields of psychology, psychotherapy and disability studies: loss, discrimination, identity and growth.

Arising from these findings, the concept of “disability apartheid” is developed into a “two worlds” model which can be used to describe how psychological factors such as acceptance and shame can impact the ways in which those with disability identify and engage with a disabling world and with their own lives.

The researcher argues for “one world” where all individual capabilities and limitations are respected. The findings also inform 12 clinical recommendations for counselling psychologists, psychotherapists or other healthcare professionals working with CMT, other neurological or progressive physical conditions, or disability.