I am looking for some feedback on a disability related nonfiction idea I have.

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Lou Trent

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I have had a pet project that I've wanted to start for a while now and I'll soon be in a position to make a go of it and I would like some feedback on the idea. The book will be a collection of twelve interviews that will be written up into an essay style with one interview per chapter. I will be interviewing six men and six women between the ages of 18-40 about their experiences and the challenges they have faced as a young(ish) person living with long term disability. Combining the interviews, introduction and conclusion it will be about 40,000 words in length. I plan on publishing it online only and donating all proceeds to a UK charity that helps people who are disabled and trying to use it to raise awareness about what it is like to be a younger person with significant health issues. Most of the feedback I've had from people I know is positive but I would like to throw the idea to people who don't know me as I am concerned that some people may be saying positive things just because they don't want to upset me.

Any general feedback would be great but I would specifically like to know what people think about the idea (I.e. is it to niche), the length and the idea of publishing it solely online.

Thank you.
 

Chris P

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Do you focus on a particular disability? Ironically, focussing more tightly might broaden the appeal. If I cared about the specific issue (not that I don't, of course) I might be more interested in reading 12 interviews on that issue than one story on the one I'm interested in and 11 I'm not.

I've read a few such collections, and what makes or breaks it for me is if there is something to interest me in the people beyond their issue. As well (just my personal taste) I like the character's story presented as a narrative than as a list of questions and answers.
 

Lou Trent

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Thank you for your response. I hadn't considered focusing on a specific disability but I'll give that some serious thoughts. My original plan was to focus on people who have physical disabilities that have left them relying on walking aids. I had planned on asking questions during the interview then writing them up into an essay style narrative rather than a list of questions and answers. Your point about talking about things beyond their issue is well made. It's something I must consider when making the final choice about what questions to ask.
 

Earthling

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I'm a disabled 30-year-old and I think it's a great idea. I'm part of an online community for people with disabilities - most of us young - and it really is a huge comfort to share and read other people's stories. Disability can be very lonely, especially for younger people whose peers are usually able-bodied and don't quite understand the struggle.

I agree with Chris that the book would probably do better with a narrower focus. Or maybe you could produce a series of them, focusing on different kinds of disability, if you enjoy doing the first one.

Have you come across the 'spoons' theory around disability? That could be an interesting concept to base a series of interviews around.
 

Lou Trent

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Thank you for your response. I am now thinking that focusing on a specific type of disability would be better than my original plan. I have heard of the spoons theory and I definitely agree with you that that would be an interesting concept for the interviews.
 

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My original plan was to focus on people who have physical disabilities that have left them relying on walking aids.

For me (I am also a young disabled person), I would be less interested if it only focused on physically disabled people because there's a stigma out there about disability where if "you don't look disabled" your condition isn't real. So if you are not writing this from an own voices perspective and are not a member of the disabled community, I would encourage you to research invisible illness and the stigma associated with disabilities you can't easily see.

As to whether this is too niche... I would suspect you might be dealing with a small target audience. When I find fiction featuring disabled characters, many of those books have a comparatively low number of reviews compared to similar books without a main character in a wheelchair, or a main character struggling with a disabling bone disease.
 
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Lou Trent

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Thank you for your feedback. I was born with a physical disability that left me relying on walking aids from a young age and I have found, personally, that there is a lot of stigma associated with young people who do have a physical disability, although the stigma is of a different type to invisible illnesses.
 

KBooks

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I enjoyed a short story collection put together by a group of authors that released I think last fall. It had maybe 12 stories, all with main characters with conditions that ranged from chronic pain disorders, physical disabilities, seizure disorders... it was very well-rounded. Not quite the same as what you're planning as it was fiction, but a great read.

If you want to focus on a narrower subset, that may help with marketing to that subset of readers. I was just suggesting that widening your focus to include narratives from people with invisible illness/disability (chronic pain, MS, migraine, fibromyalgia, mental illness, etc) might potentially increase your readership, too.
 

aspirit

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If it's possible for you to handle well, I suggest adding non-binary people, an intersex person, or a trans woman and a trans man to the interviews. Something other than 12 cisgender men and women. (Some intersex people are cisgender; that would work, too.)

Different socioeconomic statuses and ethicities would be good, too.

I'd be curious to reading about how mobility disabilities are handled in the UK, but I wouldn't bother much with a book that was all about people who don't have the additional medical challenges that come along with ambiguous sex or gender characteristics. My question as a reader would be "Do people like me have it easier or harder in parts of the UK?" If I don't see anyone like me, I personally am not going to care.

Also, I think spoons are overused. That's a very basic metaphor that muddles discussion about how one can out of energy to deal with one thing (like walking) while have energy stores for other activities (like working) that don't wear out the same way. While a note about the spoons metaphor could be nice-'especially if interviewees talk about it--a spoons theme could be annoying.
 

aspirit

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PS: I'm in my mid-30s and use a cane as needed. FWIW.
 

Lou Trent

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Of course, I think that I have a lot more to think about when it comes to who I speak to for the interviews. I do appreciate all of your your feedback.
 
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Maryn

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Stray thought as I read this thread: It might be smart to interview far more people than you necessarily will include in the final version. I agree that a variety of types of people, in every way that can be taken, is desirable. If you plan to include a dozen, consider interviewing twenty.
 

PorterStarrByrd

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I'm assuming all are doing well (relatively) and it sounds like a great idea if there is a clear inspirational message by example and there isn't repetition of the experience. I wonder if the market has or hasn't been fllooded and what might make it stand out from other work. Perhaps a 13th chapter of the FDR experience or something like it that hasn't been recalled recently might set it apart.
 

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So some thoughts:
You say you want to bring attention to the challenges of young people with disabilities, but what attention? Are you talking about people that grew up with disabilities or those that suddenly gain them? And what level of debilitation?

What is your goal behind bringing this attention? Societal change? Policy change?

As many of the people have mentioned, focusing on a single disability might be good... but my thought would be that you can also narrow the focus by choosing what/how/when the disability occurred and it's overall effect on life.

For example; I became disabled in my mid-30's. In just a few months, I went from a highly active professional who also taught Tai Chi and college on the side to a complete life change. At the end of those couple months, I had chronic pain from fibromyalgia and epilepsy.
I have overcome; even though I have had to change so much about my lifestyle. My disability is generally invisible. People don't see me as disabled, because when I am doing well enough to be out and about, I am strong as an ox, bright, and generally in a good mood.

If you are trying to bring attention to the fact of young people suddenly becoming disabled and how it affected their lifestyles and family, then that could be your narrow focus. It then doesn't matter if it was a car wreck, disease, etc... it is the fact that they had this life changing event.
And I wouldn't limit it to 6 female and 6 male. Like some other people mentioned: not everyone is CIS.
I had a hard time finding life insurance after getting fibro, because the vast majority of men who get fibro commit suicide within just a few years, due to a mix of factors. The gay guys tend to fare better than the straight ones in that regard (what with expectations that a man be the bread winner, etc..)
And that being said: if your goal is to bring attention to this challenge, DON'T make it a "feel good" book. Include some of the failure stories. The US disability system has issues, I know from talking on forums with my Brit friends that the UK system for men with invisible illness is much worse. And if you can get permission, interviews with family, friends, etc... of those that ended it in suicide, particularly pointing out the issues that they faced that led to it. Not just: they hurt, but they couldn't get disability, couldn't work, couldn't get proper care, painkiller addictions (especially given that so many doctors just suddenly cut all opioids from patients without regard to the fact that some of those patients really did need the painkillers), etc... or even survivors of attempted suicide.
 

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