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Posted by on Mar 20, 2015 in At TMV, Health, Society | 12 comments

American Compassion and ‘Invisible’ Disabilities: A Sequel

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One of our freshest faces at The Moderate Voice (TMV), Daniel Faris, recently posted a story that has touched many hearts and attracted comments from several people who themselves suffer, or who know someone who suffers from “invisible” disabilities and who oftentimes do not receive the “American compassion” — the care and understanding — they deserve.

But while it may be true that, in these cases, “American compassion” may be lacking, there is no question about “TMV compassion,” judging from the many TMV readers, authors and editors who have expressed sympathy, have made suggestions and have provided valuable information.

I was especially struck by Faris’ observations that it’s not only about the public perception of these disabilities, but:

The whole gamut from doctors, to employers, government assistance agents and insurance companies have even been known to give disabled persons a difficult time. Some of these disabilities and illnesses are hard for doctors to diagnose, carrying many symptoms that could easily fall under other common problems.
Employers, on the other hand, often refuse to acknowledge an issue… The same patterns occur with government assistance agents and insurance companies, especially in cases where a doctor has not properly diagnosed their patient.

One reader in particular seems to have suffered “the whole gamut” of consequences arising out of his disability, mainly because of lack of compassion and understanding.

His screen name is “DavidRockies.”

While I have no way of verifying the details of his story, I have no reason to doubt it either.

“David” was born with “a complicated list of eye problems and a ‘Primary Immune Dysfunction.’”

According to David, for over six years, one of his eye problems was treated with eye drops that eventually burned his corneas, leaving him in severe, chronic pain.

Medically disabled since 2004, David had to leave a career as a Director and Vice President of several corporations.

In 2009, David and his wife moved into their brand-new house in a community with a Homeowners Association (HOA).

Living in a community with a Homeowners Association can be challenging.

I have had both good and bad experiences living in such communities, but never one that has transformed my life — for better or for worse.

Sadly, David’s experience falls into the latter category.

It starts out with the incessant and “exceptionally loud” barking of two dogs right next to David’s bedroom — “a mere couple of feet away.”

It ends with David losing “absolutely everything — [his] health, [his] functionality, [his] life’s savings, [his] house, and [his] marriage.”

In a comment on Faris’ piece, David writes:

I’ve dealt with medical and circumstances my entire life, and have never failed to find it in me to persevere and overcome.
This time, though, it wasn’t “medical and circumstances.” It was people, and groups, and agencies, and institutions. In a very significant way, it was The System … and it broke my body … and it took everything from me … and it shattered my spirit.

After listening to a January 2015 radio interview of David at “On The Commons” (A weekly radio show, dedicated to discussing the many issues surrounding HOAs and condominiums), I said to David, “I was listening to your interview on ‘On the Commons’, and was amazed at how ‘well’ you sound after such an ordeal.”

David’s reply was, “It is another of the great ironies: I still don’t ‘look disabled,’ and … perhaps I don’t sound it, either.”

He adds, “But those who know me have watched the inexorable tailspin from a functional life as a disabled person to … a basically housebound shadow of a man, on the verge of not being able to take care of himself.”

This brings me back to Faris’ excellent article which he concludes as follows:

People often argue against those suffering with a “but you look good” sentiment. It shouldn’t be like that, for anyone suffering from a health issue. It shouldn’t matter whether the problem is visible or not.
The best thing we can do to help is educate ourselves, and others, on the matter. Take some time to research what these different illnesses and disabilities do to the body. Get a better understanding for how these unfortunate people have to live their day-to-day lives. Become passionate and sympathetic, not just for them, but for yourself, as well. You never know when you might run into health issues of your own and, in turn, might require the same hard-earned empathy.

David (his real name is Neil Brooks) did not receive such understanding and sympathy. Today, perhaps broken in body but not in spirit, he is tirelessly trying to get his story told … widely: “I’m trying to bolster my spirit for … just one more major push — the push to find yet another new life … within even worse medical circumstances,” he writes.

Those who are interested in learning more about Brooks’ incredibly sad experience and perhaps want to help him get his story told, can find all the details here, listen to the On The Commons interview here and access all of the case’s documentation here.

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  • ShannonL

    Not that it even compares to Neil’s story, but…. I am in perfect health outside of food and other allergies.
    The US has gotten pretty good about dealing with food allergies. The EU is pretty far behind and asia is a disaster. I have a chance to travel to Japan, but wont because I have no idea what I can and cannot eat there.

    What really sucks is my perfume/fragrance allergy. A strong fragrance can cause my face and lips to swell, hives, and basically put me on the floor. Flying is a nightmare and I typically have to wear a mask if anyone around is wearing perfume…including the flight attendants. Perfume is something that no one has to wear, but everyone wears it… colonge/deo/fabric softener… a long list… including shopping markets that pump fragrance through the ventilation system.

    It is a struggle, but it is not as bad as other people’s problems, which makes it easier for me to deal with. I do tend to isolate myself sometimes. It is just safer at home.

    I will say one thing.. I eat considerably better now because my food allergies do not allow me to eat almost all crappy foods. silver lining?

    • KP

      Silver lining!

    • adelinesdad

      My son is allergic to many things including peanut, and has other dietary restriction from other medical conditions. When you consider the limitations this places on things like flying, travel, social events and school, and the expense and inconvenience of finding safe food, I do believe it’s as much of a disability as most others. Not that there’s much use in comparing.

      It’s a challenge to strike a balance between helping him accept his limitations and focus on his abilities, while at the same time trying to push back against societal norms that make things more difficult than they need to be. The fact that some people who would not otherwise think to pick up a bag of peanuts get apoplectic when you suggest they not be served on airplanes is one small example.

      Cologne and perfume is something my wife and I only use occasionally and sparingly. I’d gladly give it up if it helps you breath easier. 🙂

  • KP

    I was hoping you would be able to produce cliff notes (of Neil’s saga)!

    It takes an organized mind.

    Nicely done.

    • DdW

      You are one of those “who have expressed sympathy, have made suggestions and have provided valuable information,” KP.

      Thank you.

  • DdW

    What has happened to the comments thread on Daniel Faris’ article, “American Compassion and ‘Invisible’ Disabilities”?

    • DdW

      Help, anyone, Is it just my connection, or have all 60+ comments at Daniel Faris’ article, “American Compassion and ‘Invisible’ Disabilities” disappeared??

  • archangel

    Let me go look for you Dorian… be back in a min

  • archangel

    Ok, that took more than a minute. Thanks for waiting Dorian. The comments are there,

    Try again now D, and let me know if they are showing up for you.

    • DdW

      Whatever you did, it worked. Thank you and have a great rest of the weekend.

      (I could see and read comments through e-mails from Disquss, but they were not showing up for me on the thread itself)

  • adelinesdad

    I’ve noticed and commented before about how the court of public opinion can be just about as devastating as legal courts, but without the safeguards in place to avoid harming the innocent. This worries me in particular with regards to social media, but David/Neil’s experience reminds me that it’s not necessarily about technology. We might forget how much the quality of our lives depends on the goodwill in our communities until something like this happens.

    The saddest thing about his experience is that it appears that not a single person came to his aid. It seems that if just one person, ideally one trusted by the neighborhood, would have stepped back and said, “wait a minute, let’s hear his side of the story” or “let’s try to understand what he’s going through”, the situation might have turned out much differently. The fact that not one person did this is very disappointing, and a reminder to us all to not be afraid to stand up for others to make a difference in their lives. And a reminder to avoid jumping to conclusions whether it be about our neighbors or the latest perceived injustice in the news.

    I believe Neil but I also must recognize that we are only hearing one side of the story. Regardless, my best wishes to Neil and others who are suffering.

    • DavidRockies

      Dear Adelinesdad:

      To me … you “get it.”

      I’ve asked myself a million times … why didn’t anybody … ever … just talk to me ? Why didn’t anybody take me up on my offer to sit IN my house, have a glass of wine, and talk about it ? Why didn’t anybody … ever just come listen to the intensity of the barking, and look at the unfortunate relative positions of the two houses ??

      There were a thousand opportunities for a single reasonable voice to derail this wolf pack, and change the outcome. That voice never came.

      SO much of my saga is in writing, and is contained in the heaps of scanned documents that I link to on my blog.

      While I don’t really expect any individuals to go through any/many/much OF those documents, it wouldn’t take somebody long to figure out what really happened.

      A national news outlet certainly could do just that, and I think they should.

      All it would take is a review of the correspondence (in the ‘Civil’ folder) … and a review of the depositions (of me, of the dog-owning neighbors and of the HOA vice-president) for an objective person to realize … exactly how this saga played out — who did (and who didn’t) do what.

      Somebody could figure that out VERY quickly.

      A narrative was developed in my neighborhood, and my neighbors just kept doubling down and doubling down and doubling down ON that narrative: “there’s nothing medically wrong with this guy. He’s just a whiner and a nuisance.” It was the textbook definition of “confirmation bias.” They never once questioned their own assumptions.

      Nobody — throughout the reams OF documents — ever said just what you said: “what if this is true ?” “Has anybody TALKED to the guy ?” “How bad IS the barking ?” “Just what IS wrong with this guy, medically (seems an odd thing for somebody to lie about being medically disabled….) ?”

      Nobody. Never. Not once.

      There really isn’t another side to this story. Not one of substance.

      That’s why I so desperately need a major news outlet to go through everything.

      The nuts and bolts OF the story … really is established in the neighbors’ own words. The medical folder (which I’d make available to a journalist) paints a portrait of a medically fragile man whose health spiraled out of control.

      It’s worse, now.

      If it could happen to me, then it could just as easily happen to others — particularly the ‘invisibly disabled.’

      I don’t see any way to undo the damage that was done to me. I truly don’t. I’m really in ‘checkmate.’ Candidly, I’m pretty screwed, pretty hopeless, pretty despondent.

      At this point, the best I can hope for is that my story means something.

      Getting my story told, nationally, has SOME chance of helping to ensure that this doesn’t happen to somebody else.

      Many thanks for your comments.

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