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The Line Between Supporting People With Health Conditions and Speaking Over Them

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One of the hottest topics in the health community is to what extent parents, friends and allies should speak for their loved ones’ health experiences.  In an age when health topics have permeated the media like never before, people living with health conditions, their families and their friends are clambering to share their experiences with mental and physical health.

But when does sharing your opinion about a medical or health-related issue cross a line?  Does living with a health condition or loving someone with a medical history entitle us to speak about the aspects of disability or illness that don’t personally affect us?

Not necessarily.

People with disabilities and illnesses have been subject to a long history of patronization, discrimination and disbelief.  Thanks to the ableism ingrained in our society, many people with health conditions still report instances of infantilization or feel that sharing their symptoms and experiences is unsafe due to others’ potential reactions.  Whether your disability is visible or invisible (or somewhere in between), you may feel like the struggles you face remain invisible until someone else without the same challenges speaks out about them.  And unfortunately, the practice of speaking for people with different health conditions from our own carries harmful consequences — people with lived experiences may feel like their voices remain unheard and their perspectives aren’t valid.

I’ve lived with a disability since birth and have also acquired a myriad of mental illnesses throughout my life.  I have mild cerebral palsy, which presents nearly invisibly, as well as anxiety, depression and anorexia nervosa. I’ve rarely used mobility aids and have never used a wheelchair, so I personally would feel uncomfortable sharing whether or not it’s OK to help a wheelchair user.  Likewise, I’d refrain from talking about the nuances of binge eating disorder treatment because I’m not living with BED. And I don’t believe it’s my place to speak out about bipolar depression because my own depression doesn’t include symptoms of mania.  People with those experiences are the most qualified to speak about them, so we should listen to their views above anyone else’s.

Conversely, those who don’t share my medical experiences should respect my agency and authority to speak about how my health conditions present in my life.  Each of my medical conditions provides a singular experience that may be difficult for people without each diagnosis to fully understand.  The invisibility I feel as I navigate life with mild cerebral palsy, for instance, is nuanced and challenging in a way that many cannot (and therefore should not) speak to. And similarly, I am in no way qualified to speak about the challenges of being a wheelchair user with cerebral palsy because I have never been one.

The line between allyship and preserving a community’s agency to share their own experiences can seem incredibly blurry in a world in which so many have the ability and opportunity to advocate.  However, we must take care to speak on our own behalf, sharing our stories loudly and proudly while simultaneously understanding that some health stories aren’t ours to tell. Only when we place the agency to share health experiences back in the hands of those who truly understand them and recognize that we can only speak for our experiences and emotions alone can we truly spark edifying, productive conversations about our health challenges and triumphs.

Getty image by ilyaliren.

Originally published: March 17, 2020
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