Voices Across America

Learning To Advocate With Instead of For

Adriel

State: Pennsylvania
Congressional District: PA11

Diseases

Blood Disease, Bone / Muscle Disease, Chronic Pain, Endocrine Disease, Gastrointestinal Disease, Immune Disease, Mental Health, Rare Disease

Issues and Challenges

Adriel has encountered: Access to Expert Providers, Access to Medicine, Rare / Underserved Disease, Caregiving, Disability, Discrimination (nonmedical), Financial Assistance, Housing, Invisible Illness, Medical Discrimination, Social Security Disability, Underserved Community

My Story

Learning To Advocate With Instead of For As A Caregiver

When people ask me, “What do you do?” the conversation has often gone like this:

“I’m a caregiver.”

“Oh, you mean like in an old folk’s home?”

Or

“Like with kids?”

Over the years it has felt like wading through thick mud trying to get my answers out in a way I feel the listener would understand. My mind gets flooded with the complexities of caregiving; the heaviness and depth of the feelings that come with it, and the history of suffering and joy intertwined that I’ve witnessed and experienced. I’ve struggled many times with how to convey the immensity of it in a casual conversation.

Eventually, I built the simplest answer I could to get some of it across:

“I’m a caregiver for my chronically ill Godmother in her home.”

Then come the wide-eyed looks when I say: “I’ve been doing it for 15 years” and “She’s such-and-such age”. The idea that someone needs help for longer than a few years seems unheard of to so many people.

More often than not I also get some variation of “Oh, God bless you! I could never do that!”

Despite knowing that most people say it with a tone of respect, it also feels like a slap in the face. Not just to me who caregives for someone I care deeply about, but also because it reveals a pervasive view of our society, that those who experience weakness are somehow a burden. Ultimately, caregiving isn’t difficult for me because of my Godmother’s illness, but because of the way illness and disability are treated in this country.

Caring for someone with chronic illness, rare disease, and a brain injury in a society that barely understands how to handle the common cold (even despite having been in a deadly global pandemic for 2 ½ years now) can be maddening, to say the least.

There’s very little support, understanding, and even just simple curiosity about what chronically ill persons and their caregivers might go through. There is a palpable wall between myself and those around me who have not yet dealt with a chronic condition. More often than not they don’t want to know until they are forced.

That’s not to say that I always wanted to know either. I was a very naïve and frankly, selfish 21-year-old when I started in this position. I barely knew how to take care of myself, let alone support someone with such great need in their everyday life. It took a few years of wrestling with myself, my own ableism, impatience, and assumptions about how I thought illness should go to get to a place of deeper listening and learning.

Over the years, I’ve witnessed first-hand how people with chronic illness and/or disability have their agency taken from them. Whether it be from the symptoms of their diagnoses or the people and systems who are supposed to be helping them (including the medical community). There is almost a constant barrage of limitations imposed upon and assumptions made about why they are sick and how they should be addressing it.

Ludicrously so, underneath it all seems to be the belief that it is somehow the fault of the person in need that they are sick and/or disabled. And if there is any struggle in areas like finances or getting adequate medical care or being able to be a “productive member of society”, there can be an extra layer of disdain for the inability to follow through on one’s “responsibility”.

So in the minds of many, given that it must be the fault of the chronically ill and/or disabled person that they need any help at all and they couldn’t possibly know how to solve whatever issue they might be facing themselves, the helpers/advocates often approach the situation with the idea that they know best.

I’ve lost count of the times that I’ve experienced the chaos that this attitude brings into the life of a chronically ill and disabled person. My Godmother has referred to this demoralizing phenomenon as when “the help hurts”.

Doctors, nurses, pharmacists, social workers, county assistance offices, charitable organizations, church members and leaders, friends and family, repairmen, fellow community members, and other caregivers, have all taken it upon themselves at one time or another to make decisions for my Godmother instead of with.

This is not to say that when a professional is involved, they do not know their field better than the person with a chronic illness and/or disability. Or that they do not have anything to offer as a way of true help or advocacy. But something crucial that I have learned as a caregiver for someone whose life requires interaction with a lot of different kinds of people in helping positions is that even professionals make mistakes.

And when a mistake is made in relation to the life of someone with chronic illness and/or disability, the results are usually much more catastrophic than in the life of someone who can just find another doctor or has the energy/means to fix the mistake themselves.

What I’ve learned as the prevention for this is so utterly simple it’s a wonder that with all of our supposed knowledge in the 21st century, we’re still not doing it:

Learn how to stop and listen to the chronically ill and/or disabled person.

Their stories are integral to learning how to best come alongside to offer actual help and also to improve our jobs as helpers. They know their lives, their conditions, and what their bodies are and are not capable of. Barring severe mental impairment, they are usually more than capable of coming up with solutions to the problems they face. It’s often just that the world around them has not been fashioned accessibly. This is not their fault. They just need help.

And I can’t stress this enough: if we as helpers/advocates listen, we will stop wasting time on solutions that have already been tried, we will decrease the harm done to the life of a chronically ill and/or disabled person, and we will be much more effective in taking responsibility for the mistakes that we may still make. We cannot leave the mess of our knowing best for the chronically ill and/or disabled person to clean up after us. We must learn and do better.

I can’t say that I have mastered this lesson perfectly over the last 15 years. I still stumble, leaning on my knee-jerk reaction of being the able-bodied savior, then having to stop and re-orient my thinking. But I’d rather stumble in the right direction than go back to thinking I know best. The knowledge and experience I’ve gained on this journey are worth their weight in gold. I can only hope that my story encourages other helpers to benefit from listening as well.

My Motivation and Inspiration

My biggest inspiration as a caregiver and a person, are two very special women: my Mom and my Godmother.

My Mom, who has struggled with her own chronic illness since I was a child, is who first taught me how to care for others. She lived by example, showing me how to walk alongside those who are suffering and offering her presence, time, hospitality, and practical care to those in great need. She was the first caregiver for my Godmother.

My Godmother who has suffered immensely for many years from rare disease, chronic illness, and the effects of brain injury, is also one of the most alive, beautiful, intelligent, and breathtakingly caring persons I know. She has patiently taught me how to be a better caregiver and a better human being.

Without these two women, I truly do not know who or where I would be.

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