Neurodiversity

I Am A Caregiver

When Lilly was born, I have became an advocate, but I wasn’t prepared for it. Nine years ago, I did not know how to advocate well, and it was something that I had to learn to do. Recently when I wrote a post, I came to the realization that  I am a caregiver, not an activist!

Activism is all around us in social media, and I see the need for it but it’s not my thing. A few weeks ago, my pastor was talking about the different personalities in churches today. After a hard week, his words hit home as he went through caregiver’s traits because he was describing me. When he moved onto activist,  he said something along the lines of

“Be careful not to confuse caregiver with activist.”

There is a difference. I advocate out of need not out of passion. Being an advocate drains me (if I were a natural at activism, it wouldn’t be like that). In order to advocate for my family, I have had to fight social stigmas and negative responses on the part of others.

As a caregiver,  I focus more on social acceptance and people’s rights, because of my personal experiences. I have spent my life being told I couldn’t attend certain classes, and being told I didn’t matter because I couldn’t learn a certain way. I have witnessed how those stereotypes affect mental health, and it has given me a different view on subjects that others might not have. For example,  when I came across the manual for the Instant Pot, it said, “this appliance shouldn’t be used by children or individuals with disabilities.” I was upset by this, and in fact, my friend and I had a quite a heated discussion about this subject.

After a few conversations,  she began to understand my perspective and that wording like this could be dangerous for anyone under the banner of disabled. By trying to protect one group of people, they were in fact hurting other people defined by the same word (me included). Incidentally, the wording of the manual has now been changed.

In our day and age, there are so many causes, how do you choose what to advocate for? I have three causes that I advocate for, and if other things come up, but they don’t fall into my three cause categories, I don’t advocate for it- no matter what my views are. I still have opinions on those subjects, but I have learned that because advocacy isn’t a passion,  I have to be careful of what I take on.  I can’t burn myself out by being an activist/advocate, because I am a caregiver, and the world needs both caregivers and activists.

 

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