#3: “Who’s Falling Through The Cracks?”

This is a photo taken during a Vermont Adaptive ski lesson at the Middlebury College Snow Bowl

This is a photo taken during a Vermont Adaptive ski lesson at the Middlebury College Snow Bowl

I went into these interviews already knowing my own thoughts on the subject of mental illness, and the people I interviewed are both very close to me, yet have completely different and unique insights. Something one of them said to me really stood out. “It’s hard for me to understand– how maybe the average person would see someone with an intellectual disability.” It really showed me that everyone has their own perspective on these issues and I can’t take any of them for granted. I can’t assume anything about one person’s experience of a certain issue just because it’s my perspective, and no matter how hard I try, I won’t be able to represent every person’s perspective on these incredibly important issues. This means that I’m going to have to choose who’s voice I think needs to be represented the most when making this documentary. And it’s going to be hard because I’m a firm believer in the idea that everyone deserves a chance to speak their mind and have someone hear them, but I’m prepared to do it.

This same person went on to state how seeing someone with an intellectual disability warms her heart. “I think, what an interesting, remarkable person,” she said. “I want to be closer to them.” However, some people are afraid of people with mental illnesses and intellectual disabilities, not to mention impatient. Often when people have to explain something that seems like it should be simple for any ‘neurotypical’ person, it renders impatient reactions. I asked my interviewee what she thought when she saw these reactions from people in her everyday life. “It angers me when people are closed-minded,” she said. “But I’m in no position to engage with them. I need to help.” It often seems that bystanders in these situations don’t know what to do, so they do nothing and that’s a problem. “We need more of a community ethic for how to help people with intellectual disabilities thrive.”

My second interviewee had some similar insights into the appropriate behavior of bystanders. But she seemed to think that the solution would simply to help any disabled member of the community get out and about more. “People tend to be scared of things they don’t understand. That’s why people with disabilities can be off-putting. But once you get to know them and better understand them, you realize there’s truly nothing to be afraid of.” She seemed to believe that there was no one way to help someone with a disability, and no one community ethic that would be appropriate for every person with a mental illness. “The more time you spend out in the community, the more acceptance you receive. People know you, and they understand you.” She believed that it wasn’t really all on the community, how any person with a disorder or disability is treated. She believed that if you knew someone, and cared about someone with a mental illness, it’s partially on you to teach the community how to properly take care of them.

I also asked both about the huge stigma surrounding mental illness in our society, and how it shows no sign of going away. Anxiety disorders in teens have spiked massively in the last decade, and suicide rates among all age groups are on the rise. “Eating disorders, anxiety, gender shame, etc– they all get in the way because we’re supposed to be normal. But normal isn’t a thing,” said the first person. “Everyone is okay, and no one is okay,” she admitted. But she was clear on one thing: Normality is as unobtainable as perfection, because they’ve really come to mean the same thing. Now, kids are expected to know where they want to go to college, what they want to major, what they want to be when they grow up. They’re expected to have a plan, and see it through. But the idea that you have to have on pat the defines success really seems to be an unfortunate side-effect of a society that favors mental capacity, and uses it to put a value on a human life. The problem is that “illness shouldn’t diminish an individual.”

The other person I interviewed, again had similar ideas, but she seemed more interested in the fluidity of mental health and how it changes over time. “I think it’s a spectrum, and you’ll find yourself in different places on it day to day.” You could be okay one day, and then something else entirely different the next day, and you wouldn’t be able to explain it, but it would be the truth. “I think it’s true, that people with deteriorating mental health aren’t the same people they were when they were supposedly healthy, but everyone changes throughout life.” She seemed to think that no one could exist in a state of perfect mental health. She seemed to think that that state did not exist. “You can’t say you have to be healthy to be a whole person. It’s just a different way of being.”

I then decided to ask about the shift from institutional care to community-based care. While both believed it to be a positive change, as institutions often treated their patients quite poorly, they still both felt there was something to be desired. The problem was that the system really only works for a certain number of people, who can afford the right insurance or have someone looking out for them who can help them. Otherwise they don’t get the care they need. “It comes in tiers. Interestingly, the poorest people are on medicare and have really good coverage, and the richest can afford extensive coverage. It’s the middle class that really falls through the cracks.” My first interviewee shared similar concerns. “The community model is much better than the institutional model, but is it enough? The real question we have to ask ourselves is, who’s falling through the cracks?

 

Maisie Newbury

2 Responses to “#3: “Who’s Falling Through The Cracks?”

  • I found your writing on mental illness very moving. The parts on normality and community-based care stuck out particularly in their conveyance of thematic topics. I would like to know more about different care systems and how they affect their patients’ mental well-being. Thank you for the great post!

  • Maisie, what I find most fascinating about your post this week is the tension between your two interviewee’s thoughts on how communities should be educated regarding interacting with and caring for those with disabilities. Your first interviewee seems to believe that communities can and should be taught a proper ethic, while your second seems to be saying that not only is there not a standard approach that is appropriate for all, but it is also not necessarily most appropriate for an entire community to be involved in establishing or following best treatment practices – rather, individual caregivers know best the highly individual needs of those with whom they work. It might be interesting for you to explore these divergent philosophies further, and to investigate how the institutional-care vs. community-care models address these questions differently. I imagine that the effectiveness of the latter type of care can really depend on how committed and concerned particular caregivers are. Could you locate some facts or other expert opinions about the outcomes of institutional vs. community care? Why is the community model better than the institutional? Such evidence would help undergird any argument you might want to make about access to the best care. Bravo for getting at some very substantial questions in such a short time!

    Until next week,
    Dana

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