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anxiety, autism, bipolar, caregivers, disability, experience, mental health, mentally ill, schizophrenia], vice, wellness, writer, writing
I have frequently written about caregivers and their role in helping, assisting, loving, organizing treatment, taking care of finances, etc. for those of us with a disability (whether it is schizophrenia, autism, or any number of other disabilities). Caregivers are essential, and I know they need their space, their groups, and their support, and they have every right to tell their stories.
Here is the thing though, and I say this with caution (as not to offend any caregivers): we have our voice, and many of us would prefer that the public learn about our conditions from our perspective and not always the perspective of the caregiver.
Recently on Facebook, a freelance writer who I am in contact with on social media, accepted a job writing about schizophrenia, from an online site (she doesn’t have schizophrenia). I know at least a dozen writers with schizophrenia who are trying desperately to make a living doing something they can do (because there are many jobs they can’t do) and this freelancer is not only taking a job from “us” but is going to be “our voice” as well.
I am a little tired of the story of parents of a child with schizophrenia turning up in the New York Times, or other prominent newspapers or magazines, (anywhere actually) because inevitably it is a story about how “awful” it is to have a child with schizophrenia. We have all read the story of the sad “before” – great athlete, great student, popular, outgoing, to the “after” – withdrawn, unable to read or attend classes, etc. I for one, am tired of that story – extremely tired. There is another story to be told. There are thousands of other stories to be told.
I think there is a place for caregivers, and their stories, but I think the ones who should be given precedence to tell the story of schizophrenia, or autism, or anxiety, or physical disability, are those who live it. Our stories, our voice.
I don’t want to see another Hollywood script about the creepy killer having schizophrenia. I don’t want to see another newscaster or journalist speculate about the possibility of a mass shooter being mentally ill, and I don’t want to read another story by a parent of someone with a disability about how that disability is lived out.
I want those of us with schizophrenia to define schizophrenia – not Hollywood, not the media, not parents or siblings. There are huge misconceptions about schizophrenia held by the majority of the public; I want to be on the front lines dispelling those misconceptions and myths.
I am thankful for every single person who cares and is an ally to anyone who has a mental or physical disability. It is time, though to allow us to speak for ourselves. And won’t that speaking, that writing, that telling be one of the most powerful tools in getting rid of stigma, ignorance, and all the other negative perceptions? Besides, allowing us to do and get a paycheck for the jobs we are capable of doing, it also lets us define our lives and what they look like – something people have been doing for us (incorrectly) throughout history.
Yes yes yes! I cannot agree more, and you worded it all beautifully. “I want those of us with schizophrenia to define schizophrenia – not Hollywood, not the media, not parents or siblings.” – This is so powerful. I don’t have schizophrenia, but I see this story, the story of people with schizophrenia, or a disability or whatever, being taken from their hands and manipulated, all the time. Thank-you so much for writing about it.
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Thank you for taking the time to comment and for your support!
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Well written…well said. Your post is so important. In our case, our younger daughter and I have a rule: I don’t share anything unless she suggests or approves the subject matter…period. We have the same rule with advocacy.
As a caregiver, I stopped participating in caregiving/schizophrenia online support groups for the same reason (very early on in my caregiving experience)…they did not strengthen me…they discouraged me. That being said, within those groups, I met a couple of wonderful caregivers who I still follow online.
I’ve had a few blog followers suggest that I don’t share enough. I always tell them that it is not my story to tell…my blog is a resource…not a form of entertainment.
I’ve also had to tell a few family members and friends to stop sharing our story if they are doing so as an effort to gain attention or validation. I share very little of our actual experience with ANYONE for that reason…even those nearest and dearest to us.
I think some caregivers, myself included, share the “before” and “after” because we (most often moms) are immediately and, often, unnecessarily blamed (by those we least expect to blame)…but I know it often upsets our younger daughter to hear “before” and “after” and your point especially resonated with her and is so important.
Our life is not better or worse because of schizophrenia…it’s different…and we love our lives and each other despite our challenges.
I hope I didn’t leave to long of a response. I just really appreciated the subject matter. Thank You!
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I knew when I was writing this that it did not refer to you. I have known you for a long time and I have never seen you “tell our story.” Thank you for sharing your experience so other people can learn about how you handle this situation. As always, I appreciate your input/comments/experience.
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Thank you, Rebecca. And I have to say again how much my younger daughter appreciated this post. I think it all comes down to the Golden Rule…we have to ask ourselves how we would feel about someone else, without first hand experience, telling our story without our permission or at least our input. As a caregiver, there are also very few movies/books that authentically tell the caregiving experience. I am grateful for movies like Marvin’s Room…a movie that comes very close.
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Pingback: A timely post…. « mypersonalrecoveryfromschizophrenia
Such a timely post…Mental illness is real and we don[t have to be superstars to thrive despite our diagnosis, thank you for being brave and writing about it.
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Thank you for your support! 🙂
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Hey Rebecca! I don’t think others should speak for us,we should speak for ourselves.Just my two cents,lol!!!
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Thanks, Michelle! 🙂
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