Disabled patients are rightfully terrified of being hospitalized. We are stripped of our agency and control in a hospital environment. Having an effective advocate can vastly improve the experience.
A few weeks ago I wrote a piece called
“I Won’t Go to the ER Unless I’m Literally Dying.” It was an examination of all the reasons that disabled and chronically ill people fear accessing medical care.
The responses I received confirmed what I knew to be true from my own experience - many people dealing with complex chronic illness simply WON’T go to the hospital. The dangers that exist for us when hospitalized are so numerous that people will roll the dice with potential death just to avoid going in.
That article became a five part series on the overall hospital experience facing disabled and chronically ill individuals. You can find
Part 2 - Tips for Surviving a Hospital Trip When Chronically Ill here and
Part 3 - How to Stay Covid Safe When in Hospital here.
As much as many of us want to avoid the hospital - the reality is there are situations which force our hand. Whether a friend of family member calls paramedics and we’re taken against our will - or our suffering becomes too untenable and we are forced to access care - we WILL find ourselves in the hospital at some point in our lives. When that happens it’s critical you have an advocate with you.
Many non-disabled people or those who’ve had little interaction with the healthcare system often ask WHY an advocate is needed. I commonly hear things like ‘you’re in a hospital - that’s the safest place you can be.’ These comments may be well-intentioned but they display a shocking lack of understanding about the disabled experience. Unfortunately hospitals are one of the LEAST safe places we can be.
When you are hospitalized - you give up your agency. You are put in the control of doctors and nurses who may have limited understanding of your condition. What and when you eat, when you take your medications (and what medications you’re given)… it’s all out of your control. If you’re someone like me with multiple allergies and severe sensitivities it becomes even more dangerous - as hospital settings are riddled with allergens and chemical triggers. If you’re immune compromised you’re at high risk of developing a nosocomial infection - and hospitals are where the strongest bugs thrive. If you’re marginalized in any way or diagnosed with any type of mental illness - the odds that you may experience abuse or be psychologized and placed on a psychiatric hold are much higher.
All of this is to say - hospitals are simply not safe places for disabled people.
