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Posted by on Mar 17, 2015 in Health, Society | 78 comments

American Compassion and ‘Invisible’ Disabilities

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Some disabilities and illnesses are visible—and while these can sometimes lead to people treating you differently, rarely do others question whether or not something is amiss.

But that’s not the case for those suffering from “invisible” disabilities. But don’t take this to mean that one form is better, or worse, or more worthy of attention; all human ailments are equally worthy of our attention and understanding.

The point here is that many people have to live with “invisible” disabilities that can cause some pretty serious challenges in their workplace, home, and community. These conditions can include anything from lupus, to bipolar disorder, or even things like diabetes, Chrohn’s disease, and fibromyalgia.

However, it doesn’t matter how much you’re suffering, inside or out; if others cannot see it, many seem to feel that the problem doesn’t exist, or isn’t legitimate. The founder and head of the Invisible Disabilities Association, Wayne Connell, confirms that people seem to have difficulty understanding these kinds of hardships: “You know, it’s that invisible nature of an illness that people don’t understand.”

Connell knows what he’s talking about, considering his wife has been diagnosed with Lyme disease and multiple sclerosis.

“We’d park in disabled parking and she didn’t use a wheelchair or a cane, and so people would always give us dirty looks and scream at us. When they see someone in a wheelchair, OK, they get that they’re in a wheelchair. But what if they have chronic pain, what if they have PTSD—anything from cancer to peripheral neuropathy to autism?”

This stigma is often the cause of much strife for those suffering from an invisible disability. To the point where some folks cannot even secure accommodations from an employer. Joyce Smithey, a labor and employment lawyer, says that when people with these disabilities request aid from employers they frequently receive the response, “We don’t do that as a policy.”

“And that’s a problem,” says Smithey. “Because that person is not asking to partake of a benefit that’s offered in a policy; that person is asking for an accommodation they’re entitled to under the law.”

You see, because their suffering cannot be visually confirmed—at least not easily—doubt plays a huge role. As Connell said, you wouldn’t throw tomatoes at someone in a wheelchair for parking in a handicapped space. Yet, people often judge others harshly to the point where they treat those with invisible illnesses as if they are taking advantage, or demanding special treatment.

Although it may be older data, a 2004 publication from Partnership for Solutions posits that nearly 10% of Americans suffer from a disability that can be considered “invisible” by all rights. That number has surely increased over the past decade. Yet, with so many people suffering, there still seems to be a great deal of hardship surrounding the classification.

It’s not just about the public perception of these disabilities, either. 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 as described by Smithey above. The same patterns occur with government assistance agents and insurance companies, especially in cases where a doctor has not properly diagnosed their patient.

The most unfortunate thing is that the scenarios described is neither an assumption nor conjecture; ask anyone who suffers from Chrohn’s, multiple sclerosis, or a similar ailment, and they will share stories of various hardships they’ve encountered.

Carly Medosch, an attractive 33 year-old woman, has suffered from Chrohn’s disease since she was 13, she is now 33. You’d never know from the outside that something is wrong, but rest assured: she has thoroughly “earned” her status as a disabled person. Medosch recalls a time when she had “been laying on the floor in the bathroom, kind of thinking, ‘Am I going to die? Should I jump out in front of traffic so that I can die?’ Because you’re just in so much pain.”

To make matters worse, Medosch was also recently diagnosed with fibromyalgia, another invisible disability, which leaves patients suffering from an untraceable state of chronic full-body pain and intense fatigue. Those suffering from fibromyalgia often have a hard time doing simple things without feeling pain, like walking up a flight of stairs or carrying their child from their car into their home.

“Washing my hair, blow-drying my hair, putting on makeup, those kinds of activities can exhaust me very quickly,” Medosch describes. “So you kind of blow-dry your hair and then you sort of sit down for a little bit.”

But Medosch says that there is a benefit to a disability that’s not immediately evident.

“I kind of call it being able to pass,” she says. “So I can pass as a normal, healthy, average person, which is great and definitely helps ease my everyday life—especially in interactions with strangers, getting your foot in the door in a situation like a job interview.”

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.

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  • KP


    Yours is a fine post, Daniel and helps do just that. Well done.

  • The_Ohioan

    In other words, do unto others as you would have them do unto you. Ancient advice that never goes out of date.

  • DavidRockies

    I’m hoping that others will take the time to read and share my story.

    Because of my ‘invisible disability,’ and a group of people who convinced the Fort Collins, Colorado authorities that there was nothing medically wrong with me, I have lost absolutely everything.

    My sincere thanks.

    • DdW

      What a tragic story, Mr. Beener. (Is it Neil Brooks?) I hope other readers here at TMV take the time to read it. We have at least one legal expert and one medical expert in our group. Perhaps if they read your saga, they may be able to give you some advice.

      Perhaps you can shorten your story (although almost every part of it is touching and essential) and try to post it in as many places as possible.

      Please keep us updated. and, most of all, keep up your spirits — almost impossible as it may seem.

    • KP

      I had four deep lacerations of my right cornea from a branch in the eye incident in 2010. I had to wear a special plastic lens to promote healing over about six months.

      The reason I am commenting is to verify that the pain I experienced after the corneal injuries was over-the-top excruciating.

      I have a high tolerance for pain but the corneal injuries had me rolling on the floor. I do believe it is right up there with the most pain a human can experience.

      David, I squirm just reading your chronic pain story.

      On treatment, my physicians discussed a corneal transplant with me. Because of the shape of my eye, it would not heal. Have your docs broached that possibility? Is it a possibility?

      One of my physicians had already had a successful transplant from a cadaver and insisted it is not overly difficult.

      On damage to the eye from the drops, did you over use? Some of the meds I used were risky if used too often. If you bear no fault and did not over use, have you considered a medical/legal consultation with an attorney?

      To be clear, I have never sued a physician (and I could have more than once) so I am not suggesting that. However, I would want all the facts in your case.

      • DavidRockies

        DdW and KP: Many thanks to you both for your comments.

        Yes. I’m Neil Brooks.

        My blog post was originally much, much shorter.

        Inevitably, though, the response would be “Why didn’t you call the Police ?” or “Why didn’t you call Animal Control ?” or “Why didn’t you move ?” or “Why didn’t you use ear plugs ?”

        If I left out every step I took, and how horrible the result, it became too easy to dismiss the issues as my failure to have done … X — whatever “X” was.

        One of the most striking elements OF my story is that I believe I did every single thing right (and MANY things, at that). To have them all just go horribly wrong, one thing after another, is one of the things that sets my story apart from many others.

        That said, I DID once write a summary for a journalist. Maybe I could review it, and offer it early in the blog for those who need a synopsis.

        My understanding is that the Statutes of Limitations have passed on every possible Cause of Action. Perhaps not surprisingly, my (very limited) faith in the justice system is pretty well gone. The saga also took away my life’s savings. Pursuing another lawsuit … seems beyond me in every sense.

        The medical malpractice part of the eye drops.

        A family member is friends with the best MedMal attorney in that area. I actually DID speak to him, after we found out the drops were Drano. He said two things:

        1) The State of California capped non-economic damages to $250,000, so … there wasn’t enough money in my case for them, and

        2) Three eye docs in the same practice were treating me during the same six year period. All of them having missed it (that the damage was drop-related) established ‘standard of care,’ so … if a few docs screw up horribly, they’re covered.

        Corneal transplant: my Boston-based cornea guru has always been dead set against it. Way too much risk. At his clinic, I met an endless stream of transplant failure patients, being fitted for his lenses. I’m not actually sure if a transplant would solve my corneal pain issues, since the transplant AFFECTS the corneal nerves, but doesn’t exactly “swap them out for new ones.” Pain also lives in the brain, so … like “phantom limb pain,” sometimes it just persists.

        My brother got hit by the edge of a plywood sheet … right in the eye. Pretty bad laceration. The dog caught my wife in the eye with his paw/nail. Both were in relative agony during the healing process, so …. KP … absolutely.

        FORTUNATELY … I do not always live in 10 out of 10 eye pain. If I stay inside … in dimly lit rooms … with 45-50+% humidity … and don’t do anything (ie, watch/listen to TV) … for hours and days … I can get the pain down significantly.

        But being outside, or in any environment where I don’t have such ‘environmental control,’ can ramp up the pain and keep it there for hours/days.

        My heart is getting worse. My spirits … well … they’re not holding up well.

        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.

        I’m trying to get my 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.

        Many thanks … again.

        • DdW

          I was listening to your interview on “On the Commons” and was amazed at how “well” you sound after such an ordeal.

          I have neither a legal nor a a medical/psychology background but it seems to me that just working on “getting your story told’ should give you some inner peace and motivation.

          As I said, please keep us posted and wish you well.


          • DavidRockies

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

            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.

        • KP

          I have a suggestion for you.

          I realize reading presents a challenge. Maybe you can read in short spurts.

          The book I am thinking of is a series of 23 letters.

          I know that it is on audio at Amazon.

          “Resilience — Hard Won Wisdom For Living a Better Life”, by Eric Greitens, Navy SEAL.

          “You cannot bounce back from hardship. You can only move through it. There is a path through pain to wisdom, through suffering to strength, and through fear to courage if we have the virtue of resilience.”

          I would be pleased to share my copy with you.

          • DavidRockies

            DdW and KP: apologies in advance.

            I have a dear friend who’s _horribly_ sick (CFS/ME). It gets painful to hear how poorly she’s doing, month after month, and the failed treatments and medication side effects that she endures.

            But … she’s dear and wonderful, and I find it in my soul to hear her trials.

            Meaning …. nothing in this journey — the effort TO get my story told — has been cathartic or brought me healing. It’s rather like a person stranded on a deserted island: there’s no therapy in trying to signal ships and airplanes. The therapy comes in being rescued.

            These people … this city … having cost me my custom, fluid-filled, prosthetic contact lenses … is VERY much like taking the wheelchair from a quadriplegic, and making sure they cannot get another. It’s been that severe a blow.

            I’ve never done well with audio books.

            Because I’m not blind, I get visually distracted. I know lots of people who say the same thing: audio books are great while driving or doing something else. Also, I’m still battling infections, and … now … heart trouble. The end result is pretty wicked fatigue. Audio books (I have tried listening to a number of things on YouTube) … put me fast to sleep. Unlike printed books … when you fall asleep to audio … you REALLY lose your place.

            In terms of printed material … not possible. I have to restrict that to mail, bills, a restaurant menu, instructions — purely mandatory stuff. My eyeglasses are ridiculously strong, by themselves, and I have to wear +2.00, +2.50, or +3.25 diopter reading glasses OVER those. It’s so much plastic (lens) that the optical quality is garbage. Makes me sick … in mere minutes.

            Yeah. Can’t be inside. Can’t be outside.

            My sincere thanks … again.

          • KP

            If I were in your situation I would ask myself, or a trusted advisor, what can I do to add quality of life via health.

            For me, the answer would be basic. Not easy, but basic.

            Two things come to mind.

            1) I would eat (source nutrition) like my life depended on it; because it does. I have written about this in posts here, or you can contact me off line via kevprcll at AOL dot com.

            The other _must_ is to secure additional sleep. During deeper sleep our bodies and mind heal. We release growth hormone and are physically and emotionally cleansed through quality sleep.

            To this end I would search for answers, again with a trusted medical source and then branch out to holistic literature.

            I am guessing you have tried sleep aides so I will skip over the usual.

            Xyrem is a tightly controlled medication used to treat cataplexy and excessive daytime sleepiness in patients with narcolepsy and other serious sleep disorders.

            For someone desperate to sleep due to serious medical issues, which also become emotional issues by definition, it may be a life changer.

            Perhaps you can consult your physician(s) or Google the Xyrem program for more information.

          • Both good points KP… good nutrition is more than just eating healthy it is also learning about balance in the food we eat.. allowing good foods to promote one another…

            Have been following the exchange and one thing i humbly offer to Daniel for consideration is be gentle to your self, embrace the pain, such as you are such as the pain is… One of the things i seen time and time again is when embraced compassionately within, pain has a powerful way of birthing a new being that can navigate the world without suffering… then you will be a light for others trying to make their way… truly wish you godspeed at you continue…

          • KP

            Valuable insight. Wish you lived in my neighborhood! But I will settle for the TMV community 🙂

          • DavidRockies

            Thanks, all … again … for the feedback, the caring, and the advice.

            While I’m no master of brevity (writing is MUCH easier for me than reading) ……

            KP: Ahhhhh. My beloved former home — San Diego. Lived half of my life there. Moved from there TO Colorado. Kind of wish I never had……

            Nutrition: when I got back from the Mayo Clinic, I worked with an MD turned ‘functional medicine’ practitioner. In her humble opinion, my diet was exactly what she tried to get her patients to eat. I’ve always lived healthy, been health conscious, and pretty well informed about nutrition. Was also very active in running, biking, and some triathlon stuff in San Diego 😉

            Meds: now, that’s where we run into trouble. Mayo was very clear — and I couldn’t argue — that my history of serious med reactions — the last one, nearly fatal — meant I should take anything else unless my life depends on it.

            The new problem is atrial fibrillation, atrial flutter, and trigeminy — heart. That’s almost certainly adding to fatigue, but … is a huge contrandication for stimulants of any kind … even without the aforementioned Mayo death threat.

            Cardiology and Electrophysiology agreed: we have to treat these heart issues, but … we can’t; not safely. Rock:hard place. And the arrhythmias are getting worse.

            As to pain …..

            I won’t say I love it. I won’t say I’ve made peace or friends with it. I won’t say I embrace it.

            I will say … it’s not the biggest issue.

            The biggest issue is the functional limitations on me, caused by losing the use of my bionic, fluid-filled custom lenses [1]. They were the only thing that protected my eyes from environmental stuff, and they did an infinitely better job of correcting my underlying vision than glasses do.

            Thus … the “can’t be inside, can’t be outside” problem…..

            Yeah. Things … aren’t good. They just aren’t.



          • KP

            A-Fib sucks. It’s becoming relatively common in the 50+ lifetime ultra endurance crowd. There is not much research on this relatively small community as it is new, but growing.

            Your case may be different, however, I have a friend who is also an Ironman athlete, as well as a faculty member at the University of Mississippi as well as an adult cardiac surgeon.

            He writes a blog; “The Athletes Heart”:


            If go there you can read more about Larry and enjoy one of the best blogs on the Internet.

            He often answers direct question via facebook as well.

            Specific to this conversation, here is a link to a blog post concerning A-Fib. I found it personally helpful. Readers may also find it interesting:


          • archangel

            Thanks for that solid link KP. Appreciate educated and reasoned writing . You know, the topic here in the article is ‘invisibility’ of symptomatology and thereby underlying illness, different than those who immediately are, to most persons, clearly afflicted.

            I know you recall Jim Fixx. Speaking of invisible condition [in his case, of the heart it seemed? or the arteries?] I think for many of us that was THE watershed event through which we understood the ‘invisible’ and the deadly invisible, was real. And yet, Fixx probably would not have stopped his regimen, do you think? even if he knew in advance? There’s a theory that that particular form, along with the bicycle of dozens of miles per week, is actually for some stronger than Xanax/Zoloft, etc.

          • DavidRockies

            Very interesting, KP. Many thanks.

            The Cardiologist and the Electrophysiologist were both stereotypically unconcerned with the underlying cause. While I get that, the options were clear:

            1) Antiarrhythmics + anticoagulants
            2) Surgery (either bilateral cardiac RF ablation or some form of the ‘maze’ procedure) AND anticoagulants

            But both they AND my primary care doc agreed that my health is far too tenuous for either.

            Dad died at 57. His baby brother died at 53. Both …. heart.

            At the moment, I’m simply waiting. If it gets better … great. If it gets worse — and it is — then maybe the risk:reward equation changes.

          • archangel

            I think KP, the ‘hard science’ is very much the medicine. Sleep. Nutrition.

            For years we have been resistant to so called ‘spiritual healers’ who want to have everyone meditate or some such only. The first things we ask is, what are you eating [or not]/ what are you drinking [or not], how much are you sleeping each night for last month, year [or not], what meds are you taking, what supps, how many persons close to you who actually understand the body and are not simply filled with bromides… what do you put on your skin, on your scalp, what fibers do you wear, what OTC do you take, what do you crave [you know KP also how to decode cravings too].

            Depression, anxiety, certain auto imm disorders, certain joint aches, pain seem very tied to the above. You cant meditate them away when taking in poison daily.

            So KP, we lived long enough to see our insights, the insights of many of those who went before us, be validated. The first thing I do, is take everyone off whole wheat, as for some reason it appears to be utter poison to joints, mind, alimentary canal, gut. Three days off, often shows near miraculous improvement in those areas of body/psyche where there have been acute/serious and previously symptoms that were non-responsive to various interventions. I suspect 90 percent of the eitiology of many kinds of what the patient often calls ‘deterioration’ is actually eased hugely by change in the items on our lists.

          • KP

            You, dr e, live close to the sage sweet spot. Not to mean you don’t also feel the tug-o-war we all experience day to day.

            Still, you get it.

            I can’t say for sure which comes first; proper nutrition and the drive toward optimal health … or the spiritual component that insists we respect our health.

            I can testify, they go hand in hand … and that you an your family are inspirational examples.

          • archangel

            if only people used their spiritual understandings this way: as you wrote KP “or the spiritual component that insists we respect our health.” You dont hear it in church, among many religious there is a teaching of denigration of the body rather than care and flourishing for the body. And in far too many ‘spiritual’ teachers relentless fantasies that have nothing to do with actions that are down to earth along with attention to spirit.

            Recently I saw a person commenting they were waiting for G-d to help them escape from an untenable situ. Another commenter said, ‘get off your b…. and stop waiting for G-d. Gave everyone a good laugh.

            I hope you will write for us more Dr. P about the nutrition angle as a spiritual discipline. I’m with you all the way.

          • Thanks KP, so true…

  • adelinesdad

    This is an issue I wrestle with. My son has a disease that often makes him tire easily, though he mostly appears normal. We have a handicap parking sticker but I always feel a little guilty when using it. After all, it’s not like he can’t walk at all. I only use it when I feel we need to. He also has a wheelchair that we use when we will be walking a lot (like at an amusement park or school field trip) and I wonder what people think if they see me pushing him around and then see him get up and run around for a while. But that’s mostly my own self-consciousness that I hope he doesn’t inherit. I haven’t actually had anyone comment beyond the well-intended but counterproductive “but he looks so healthy” kind of things.

    Ultimately, we don’t know what other people are going through. Better to err on the side of kindness.

  • Wood Smith

    You lost me with associating PTSD with handicap parking. Sure PTSD is an invisible illness but it has absolutely nothing to do with physical impairments effecting ones ability to ambulate.

    • adelinesdad

      I don’t see the connection either, but I wouldn’t assume none exists in some cases. In any case I think handicap parking is just one example of the kind of accommodations and sensitivity that we’re talking about here.

      • archangel

        Hi there AD, nice to see you. Short version PTSD can trigger neuro and motor coordination probs during flashbacks. Person needs to make b-line for ‘safe harbor’ to use certain techniques for self calming to take down abject terror often, and agitation. BP and heart rate go through ceiling and being in mileau in store during such is often terrifying. Close in vehicle, safe harbor is what military people are tuaght about bivouac and/or home base. So it’s a metaphor we use now too.

        Once a colleague of mine was denied early boarding [she had slipped disks the day before and was now deep in pain meddies] — the flight attendent at the desk said my colleague didnt look disabled to her. It was a pleasure to spend the $ airline gave when confronted w reckless disregard of a medical condition that flight attendant was not qualified to make a medical diagnosis /judgment about in any way.

        Regarding your boy, when people say ‘he looks so healthy’ I’d just mention what I say.. Thank you, please keep us in your prayers. [We have a fam member who has a disabling chronic disorder and has flare ups that make it hard for him to walk, but only sometimes. Then out comes the handicap tag, and there’s a doc letter in the glove box just in case. Also have a partially disabled vet in our family. Same and same. I think it can be tiring to constantly be educating people, but I try to when strangers might make comments about ‘what’s wrong with him? ” I want to kinda say, none of your biz. But I explain the issues, hoping they will also teach others. And someday, more people will understand.

        As a commissioner for BSA who wrote the protocol to teach accommodations for special needs, I would say, keep going, and if your boy needs wheel chair and later runs around, if anyone asks… I’d offer what i say to others: ‘Its a baffling disorder/condition/ that allows strength for some time, and then sudden weakness. Please keep us in your prayers. ‘

        hope that helps clarify ptsd and handicapped accommodations a bit

        • adelinesdad

          Yes, it does. That’s a bit what I had in mind when I figured there could be some connection in some cases. I also wondered if for people who’s PTSD is triggered by pedestrian/car traffic intersections (perhaps due to a traumatic experience with them), limiting the amount of time walking through a parking lot might make sense.Thanks for your thoughts.

          Regarding the wheelchair, sometimes I think if someone asks I would look down at the empty wheelchair in feigned shock and exclaim, “it’s a miracle!” 🙂

          It’s important not to lose one’s sense of humor even when confronted with life trials.

          ETA: One thing I wrestle with is how much to use the disabled parking sticker as a *preventative* measure. Even when he is feeling fine, do I use it to conserve his energy for later? Or do I wait until he starts to show signs? Usually the answer depends on how far away a “normal” spot is and how much we have going on that day.

          • archangel

            perfect in the moment needed “Regarding the wheelchair, sometimes I think if someone asks I would look down at the empty wheelchair in feigned shock and exclaim, “it’s a miracle!” :)”

            Made me laugh out loud, thanks AD. Agreed re humor, another kind of medicine. There’s a man who lost his arm to a shark. We sat next to ea other on a plane flight. He was so sad, still working through it all. I told him about a cartoonist who has quite a few books; he himself is in a wheelchair I believe, and he writes humor about his condition. Google male cartoonist and perhaps ‘disabled’ and see.

          • adelinesdad

            Unfortunately/fortunately I have not had an opportunity yet to use the line. People are either more understanding than I give them credit for or keep their thoughts to themselves.

        • Wood Smith

          ‘safe harbor’ reasoning seems like a long stretch to me. And the triggered neuro motor coordination probs sounds dangerous when combined with driving. Imagine having a triggering event while on the road.

          To me, disabled parking should be reserved only for those with severely limiting mobility conditions.

          • archangel

            Wood.sucker/ wood smith… just asking. What skin do you have in all this? I see you saying same and same about this topic across the internet re handicapped placards. Setting aside for the moment your misunderstanding of the term ‘safe harbor’, I’d like to hear your story. Thanks.

          • Wood Smith

            I have Spinal Muscular Atrophy and permanently use a wheelchair. My skin in all this stems from the explosion of issued placards and abuse of placards in the past decade which makes for finding and using van accessible handicap parking problematic. In the past it wasn’t really an issue because the demand on disabled parking spaces was low. Now the demand far exceeds supply making life for those, like me that absolutely require the features provided by handicap parking, difficult.

            Like many good intention programs, disabled parking has become abused to the level in which it is impacting those who it was intended for. Those who otherwise could not access goods and services without using the disabled parking features.

          • archangel

            In our family, and in our community, it just takes a phone call to a store to secure a handicapped parking space up front, or to alight at door and have another person place the car in lot.

            I think, given what you claim knowing about what kinds of disabilities others than yourself have, but how you know such definitively, I do not have facts about– but sounds like perhaps reason to get with a senator in your state, or councilmember in your community to carry a bill about two kinds of handicapped parking. One for people in wheelchairs, hand control driving, tommy lift vans ONLY like you, and another close in parking for people who are not in wheelchairs.

            I remember when the vets of WWII, Korea and Nam had no ‘handicapped’ parking, those who had a ‘plegia’ and had ‘amputated limbs’ or limbs blown off in explosions… The isolation for them is still where my sympathies lie. They had no computers to communicate with, no forums where anyone would at least give them a listen, no mobility, no ability to rage, appeal or move effectively.

            I hope you will take the issue you have to the legislature. That’s the only place where the rubber meets the road and things can be changed.

            If it were me, I would want handicapped parking for all who need it, only tiered by a triage type perspective about absolute mobility. Im not inclined to deny anyone accommodation so that only one kind of special need can push all others out.

          • adelinesdad

            I agree that Wood Smith has a valid concern–it’s why I try not to use handicap spaces unless we need to even though I have a placard for my son. But I don’t think it’s productive to pit one disability against another. I think it would be problematic to categorically exclude groups of people from being eligible, since there will always be exceptions to the rule (and, to be clear, I don’t think anyone is arguing that people with PTSD should routinely get handicap placards–only that it is possible that it would be needed).

            Better to do as you suggest and try to get more spaces or a tiered system. But I worry about adding a separate verification system. Maybe we just add some “over 65” or “limited mobility” spots closeby to the handicap spots. They could be used on the honor system–social stigma would hopefully be enough to prevent widespread flagrant abuse.

            This system may decrease the demand for handicap placards and spaces, leaving more spaces for the more severely handicapped regardless of their particular limitation. I know if this system were adopted I’d be very likely to use the “limited mobility” spaces instead of the handicap spot even if I still kept the handicap placard as a backup.

          • archangel

            Good points AD… I agree. I dont want to see government poke even and ever more into people’s private lives. I just have a feeling rather than trying to fit ten pounds of mud into a five pound bag, some genius who really is logical AND imaginative will come up with an alternative. I can think of many including trained valets who help dismount at door,then go park vehicle for person. Robot summoned ‘railroad track’ that brings vehicle around, as in rad pkg lots in dubai that bring cars up and down vertical lots, sort of like dry cleaner racks revolve horizontally bringing the needed things to the fore on a motorized track.

            It would take investment, but seems to me then would allow all to have access who need access. The place where there are the most ‘handicap’ parking spaces I’ve seen are walmart and grocery stores. It seems that the big box stores that carry billions of goods have many spots. mom and pop, none, store front rentals, none. Small but ubiquitous chain store restaurants, none.

            I also note at state and federal legislative hearings, abject hateful voices on all sides of the matter. Been there. Full witness. Some on any side ought have their brains washed out with soap, their hatred of other humans, for whatever reasons, is SO palpable. However, there are also SO many gentle souls who are articulate and reasoned who want parity for all. That’s where I rest. Not who can we cut, rather how can we design processes to help all.

            Yet, I am far too well aware of some who ‘pretend’ to have disabling issues. Parking is the least of it. Taxpayer money to support their scams is the issue. That is a whole other serious issue, whether W/comp, or SSDI, WIC or food stamps and/or all plus other.

            Too I’ve seen too much. Too much abuse in public of the disabled person by their own spouse or family member, yelling at them, harassing them, etc. That is beyond tragic. I’ve also seen some of those who are having such difficulty snap and bite at those who are trying to patiently take care of them, and can see how that too, can be hell on earth for all concerned.

            Then there are privileged persons who are handicapped. Recently a well known woman snowboarder who lost legs in bacterial meningitis, was on audio from her booksigning, saying people with enormous disabilities like hers [she worked back up on prosthesis to snowboard again and did the whatever it is called, ‘dancing with the stars’ final on tv] can have the determination–and can do anything. She has ‘her feet’ overnighted to her to go with different moves she is making [walking, dancing, snowboarding, etc]

            … and a woman from the audience nicely but with a sharp arrow hit the mark, and confronted her, saying that she herself had amputations in childhood and has on top of that a deteriorative disease of the bones… and that one CANNOT
            do anything,’ and further more others dont have the wherewithall snowboarder person has to have ‘prostheses’ overnighted to them, etc.

            Which brings me to last point. Far far too many disabled persons cannot get the prostheses, chairs, vans, cars, housing they need. They havent the money, not even close. There too HAS to be prostheses that do not cost 30 grand out of pocket, HAVE to be fine and effective chairs and vehicles taht are safe, effective comfortable, with no break downs that are in reach of those in need.

            Taking me back to the misuse of resources that I believe is the #11 issue on a scale of 1-10, when persons bear false witness in applying for disability resources that ought go to those who are in far far FAR more need.

          • Wood Smith

            Personally my hopes are on the autonomous car. Then everyone can be dropped off and picked up at the front door. And where the car parks doesn’t really matter.

          • archangel

            That’s a superb idea. I wonder how we can help persons who are in the biz already do that. Like an Uber-autonomous service. Cool idea. Keep going with it WS

          • Wood Smith

            ADA law already requires two kinds of handicap parking. Normal non “van accessible” spaces with a 5′ access aisle and “van accessible” spaces with a 8′ access aisle. All lots buy law must have at least 1 “van accessible” space. For large lots for every 8 handicap spaces 1 must be “van accessible”. Read more at:

            Anyone with a disabled parking placard can legally use a “van accessible” spot. This is because for small lots there is only one handicap spot and it must be a “van accessible” one. Unfortunately, in larger lots the “van accessible” ones are typically the first to be occupied due to they are typically the closest. So having two types really does no good.

            I have taken the issue to my local state representatives. It’s a politically sensitive issue due to overly passionate reactions versus logical thinking. No matter how it’s handled, there absolutely needs to be a cut off point to who/what qualifies for a disabled parking permit. Those who fall on the wrong side of the cut off point along with their advocates will always be boisterous. This is why the topic requires a logical rather than a passionate approach. Where logic dictates you cater to those who absolutely require the accommodation and only consider expanding the inclusiveness if it has little to no impact on the requiring group.

            Handicap parking for all who need it is an ambiguous statement. Everyone’s definition of need is different. Some lean toward need meaning want, others lean toward need meaning required.

          • archangel

            Thanks for the information WS. I can see you’ve been to the mountain. I’d just say, try to keep going. Try a senator, if you google, likely at least one has a child with certain challenges, and that’s the person to pinpoint and see what can be done. In sponsoring bills, we try to find people of like kind. For instance, on another subject entirely [this comments section has really veered all over the place from the orig post, lol] the Taos/Tewa tribe petitioned the Feds for decades to give them back blue lake, high above the pueblo, as it was/is tribal lands and had been overtaken and desacrated by far too many ‘tourists’ and their trash. Finally, the idea was struck upon to contact a OK senator who was married to a native american lovely woman, to please carry the bill. The bill was successful [and that is almost unheard of for us who promote NA rights to lands] and blue lake is now under the care of Taos pueblo people. And things are better.

            It may not be a shoe-in, but having someone who even halfway understands whatever the issue and who has the POWER to carry the bill, and often who might hopefully ‘be owed’ logrolling by other legislators… is a good possibility most days. I’m sorry it takes time to do these things, esp when people dont feel well. I know it well. But, keep going as you can.

  • Ken McKim

    This is why I created the “Feel This Pain” series, to help educate people on what different types of chronic illness pain feel like.

  • Thanks Daniel for sharing your experience of chronic pain, most courageous… I have a good friend that has TBI from a severe car wreck that killed his fiance…He is young and looks healthy but he struggles at many levels and does fine as long as he keeps to a structure environment..He also gets lots of ignorant remarks and negative behaviors from others.. It comes from men that seem to ‘hate’ him without cause, all they can see is he is not working.. What you endured would be most challenging… what a strong soul… Hope your life situation comes to a place you can rest and do the necessary deep healing… Will hold you in good thought and prayer…

  • archangel

    DavidRockies, keep going as you can. KP, is that book by any chance on audio for David?

    • KP

      Yes it is. I specifically looked.

      • archangel

        thanks KP. I was thinking for people who have sight issues also.

  • I myself am Autistic. My life since.childhood has been a struggle. Only recently have I actually become to know it as Autism. I was diagnosed late.

    • DdW

      Peggy Derr,

      I don’t know if the site “aspiesgirl85” is yours, but I have now finished reading the essays there. I don’t know much about autism, but I found the writings very well and tastefully done, touching and enlightening. Thank you and God Bless.

      • archangel

        Autism which is a brain, motor, neuro developmental disorder of unknown eitiology but many guesses and speculations…, has a very long panorama or spectrum Dorian. Most afflicted are those who when very young show certain issues that do not respond to medicines, therapy or other.

        Asberger’s is the mildest form on the spectrum. People with Asberger’s are usually fully functional but challenged in certain ways of marginalizing others by being self referent, not comprehending nor registering others’ feelings, being perseverative about certain topics. Their communication is often stilted for their mind set re perception and analyses of perception is different than most.

        The moderate and severe forms of autism are disabling, communication is often nil, being able to express verbally or in writing are non-existant, though the child may show certain talents of memory and pattern recognition, occasionally in the patterns of music and math, but often cannot make application of those.

        The parents of children who are clearly and devastatingly autistic, are so often bewildered and often try any snake oil faux healer/method that comes along, for the children are beautiful and yet, there is this set of difficulties to development.

        When children who are autistic develop sexually, there are often serious issues about boundaries, and this too is a tremendous effort on parts of parents to help keep all safe.

        Temple Grandin is a person I know personally, and she has made a name for herself in certain ways as a result of her moderate form of autism, and has sensory issues which she freely talks about also. She is middle aged now, and has written several books that you might peek at, to note the unusual syntax and ideas that come from a person with this challenge.

        One of the great things about Temple, is her challenge does not dictate her life, nor does she place it at the center. She literally places some very unique ideas about animals, particularly animals led to slaughter in meat plants, at the front of her endeavors.

        • DavidRockies



          Temple’s from my neck of the woods — where it all happened. The connection between so many ASD people and animals is profound. I’m so glad she was able to capitalize on that.

          I wonder if you’d be willing to pass my story along to her. I never even considered reaching out to her, though I probably should have.

          While she may not identify as such, she clearly has what some would call an “invisible disability.”

          She may be well placed to help get my story told.

          I suspect that … what would resonate with her is … if things were different, it could have been her. She may be interested in the ‘dog’ angle, too.

          Actually … since I’m back in that town … I’d jump at the chance to meet her for a cup of coffee, somewhere, if she’d be interested.

          My treat 😉

          • archangel

            David, I suggest you write to Temple through her publishers. Look it up. As I understand it Temple is not often in CO, but rather at work in various parts of the world. Through her publisher[s] would be the most sure way to make the kind of inquiry you are hoping for.

          • DavidRockies

            Many thanks, Archangel. I submitted a note through her website.

          • archangel

            David, I’d also send through her publishers if you can, as publishers often have agreed, via the book contract, to forward any mail to author. It’s sort of like wearing suspenders and a belt… just to be sure it gets to Temple. She is a lovely person and I know she will respond if she can. She has also brought such enormous and interesting good to aspects of her life and world. One thing you will not find in Temple, is chronic ‘poor me.’ I’ve known her since 1975, maybe a couple years earlier. She is clear about what she has been through, but she is not about ‘herself’… her struggle early on in life is background, not one-point foreground in her life. This attitude is part of how she rose to make notable contributions… all her time given to helping, esp animals. Some criticize her for helping animals become more calm who are being led to slaughter. But I think many can see that her compassion is broad, including animals who in the culture are considered food for others.

          • DdW

            @ Dr. E.
            Thanks for all the support and advice you are providing in this thread and, yes, I can see all the comments again, Thank you.

            Cyberspace is strange and unpredictable.

          • archangel

            you’re welcome Doriancito. As you know, duendes… lol

          • DdW

            LOL. That is only the second or third time I hear about “los duendes” since I was a little kid.

          • archangel

            I think it was Garcia Lorca who called them ‘the spirit behind true talent’ .. but some think they are mischief makers, but many in the pueblocitos heard about them in nearly the same breath as la llorona… lol

          • DavidRockies

            Thanks again, Archangel.

            It looks like it’s Simon & Schuster, and … it looks like it’s an old school “snail mail” process.

            But I’ll print out a letter, figure out how to use an envelope, AND how the mail works 😉

            I’ve never identified as a disabled person (, either), nor defined myself by my disability. In no small way … I guess that was a contributing factor (“There’s nothing wrong with your eyes. We’ve all seen you ride your bicycle”). Had I just given my life over TO my disability, maybe none of this would ever have happened to me.

            Pretty awful irony, huh ?

            If you choose not to believe somebody who tells you they’re disabled, then what perception does that leave ??

            These people … my neighbors … my town … thought the worst. They got every single thing wrong.

            I’ve heard lots about Temple in the past. I’m glad you two are friends. I hope my situation gives me the opportunity to meet her.


        • I really think you should rethink your stance on Aspergers. We do register other people’s feelings. We do have empathy.

          • archangel

            Sorry Peggy, you identified yourself this way: not as having Asberger’s. You wrote “I myself am Autistic. My life since.childhood has been a struggle. Only recently have I actually become to know it as Autism. I was diagnosed late.”

            Also, I was responding to Dorian who said he did not know much about autism.

            In Asberger’s as an aside, to Dorian, the issues are many including not recognizing social cues, having an inaccurate sense of other’s words, feelings and more: these are poignant parts of clinically diagnosed Asberger’s. There is most often the inability to make friends and keep them for what appear to be inappropriately aggressive or non-responsive behaviors. Empathy issues are a large part of Asberger’s. There is much more Dorian. Just again, the parents of children who suffer with this, still are seeking effective helps for their children. That’s where my heart goes, for the families especially of clinically diagnosed persons who grow old and their parents far older, well, let me just say, holding weeping elderly parents who are afraid of what will happen when their now also old child afflicted with various, is alone, when both parents die. There is little care, consideration, public resources for the elderly who have various forms of intellectual, cognitive and emotional challenges.

          • Technically Aspergers is no more. We are just on the spectrum now. And functionally…I can only function when on 6 psychiatric medications. If I don’t take them, I don’t eat, don’t bathe, don’t get out of bed, and I’ve been institutionalized before. Prozac, Seroquel, Clonopin, Wellbutrin, Buspar and trazadone . Aspergers is a form of Autism and I am on the severe end of high functioning. I was also abused almost everyday of my school life. Being strangled and spit on because you are different is very painful.

          • I lived at home till I was 27. I can’t seem to finish college or hold down a job. I cannot even drive. I have a tendancy to walk into the road without looking and I’ve also been used by several men. It’s easy when you’re so naive.
            And you think my parents don’t worry.

          • archangel

            I dont see anyone here saying anything about your parents in any way. I’m sorry you seem to feel that way, but I will say, here at TMV is not the place to make unwarranted accusations. Read the commenter’s rules at the top of the page before you comment again.

          • archangel

            Peggy, I’ve asked you according to our rules of civility, not to attack others here. I’ve asked you twice to read the commenter’s rules at the top of the masthead. You appear to have not. If you continue to attack you will be banned. The watch word here is civil discussion. Your projections of ill intent on anyone here, are against the rules of this private site.

          • archangel

            Asberger’s is very much a disorder and a diagnosis. Today and in the past. What has changed as a result of Physicians, Psychiatrists and researchers strongly noting that Asberger’s is not to be diagnosed as debilitating across the board as Autism is, are the resources for the condition. Those, including SSDI, insurance reimbursements, etc, are more and more reserved for the far more serious conditions of full blown Autism.

      • archangel

        For others reading here, a psychiatrist Rx’s drugs for various, including Asberger’s syndrome. However it ought be strongly noted, that many drugs, such as Prozac, Welbutrin, etc are in the main for for depression and anxiety, also ADHD and other conditions that may be also afflicting a person in addition to their other clinical diagnoses/is.

        Suggest strongly if a reader wants to know about Asberger’s and Autism that one read at Mayo or DSM V, Diagnostic Statistical Manual which is an extensive book of list of symptoms, prognoses, behavior and emotional and intellectual issues for all variations and afflictions that would be called ‘mental’/behavioral, emotional, etc. The DSM is used worldwide and is coded with diagnostic numbers for insurance purposes, but also so that persons across the world can speak cohesively about the same diagnoses without anecdotal veerings that can distort, but rather clinical proofs.

        If one wants to know more about the conditions of clinical depression, clinical anxiety, clinically diagnosed ADHD, one can read what clinicians who have spent lifetimes studying the issues, say about them, separately, from reliable medical sites, vetted journals and books by those who are often nowadays, neurobiologists, in neuro-psych and in child brain chemical disorders/behavioral and personality issues.

        • Actually Prozac has been proven to help with Autistic symptom when a co-morbid disorder isn’t detected. Also the biggest problem that Autistic people have is debilitating anxiety. It comes with Autism.

          • I’m not discounting the experience of those with lower functions. I am making a point that all people with Autism should be acknowledged. No two people on the Spectrum are the same but we all go through similar experiences. People like me and many of my friends find it offensive when people tell us that our experiences are less important. I feel that is what you are saying here. Aspergers isn’t really Autism.

          • archangel

            As I mentioned, I’ve not said anything of that nature about you or others. I am speaking as a commenter here, and speaking generally about the very long panorama of this behavioral and seemingly in some, deeply neurological condition. I suggest that your labeling of those who truly suffer from autism, by calling them ‘an autistic’ rather than a person who has autism– you might want to look into that.

            And again, please read the commenter’s rules at the top of the masthead before you comment again.

            To other readers: clinicians are not going to mix extremely serious conditions that often pose perceptive errors and thereby potential periolous to the person or others, including violent acting out by a fully grown person, in the same category as a person who has challenges that do not carry peril / harm to self and to others.

            In diagnosis, prognosis, treatment plan, Rxing, etc. there is protocol to follow, precisely because there are no equivalencies for deciding triage/tx in medicine, such as patient x has a cold, patient y has life-theatening pneumonia.

            We dont say x is like y because the lungs are involved in both. Docs look at first and foremost the safety of the person and those they are in proximity to.

            And that each person, is highly individual cannot be overlooked ever. We have diagnosis on a spectrum for mental cohesiveness, as cancer is also on a spectrum, as is cardiopathy, as is nephropathology and other systems.

            In physical health, as in mental health, an individual can have cardiomyopathy, lung cancer, brain and bone cancer, in addition to incipient kidney failure, all at once. Same with mental health. There can be several conditions at once.

            It takes a good doc to see and investigate the entire condition[s], and to not just Rx once and done, but to follow the patient for the rest of their lives, helping, relieving, sturdifying in many ways… including behavioral changes and therapy, whether for physiological and/or psychological issues. The doc also has to watch over non-compliance in the patient, which is true of physiological disorders also.

            Likewise in neural and behavioral contexts, the most difficult and most challenged persons who through no fault of choice of their own, come first whether in mental health or physical health.
            That is the rule on the battlefield, and the rule in health and hospitals.

            Because there are limited resources re time, training and triage on site often has to be done, the person with life threatening pneumonia will be seen and treated for as long as it takes before a person who has a bronchial infection. Bronchial infection may be given antibiotics asap and sent home. Person with critical lung condition will be in ICU likely if warranted.

            As mentioned, there is, in medicine and psychiatry intense care for persons, otherwise most wouldnt be in the professions. However, there are also realities about patient/ family history that also are a part of what happens next.

            In terms of the topic of the post which has been buried somewhat here, the invisible difficulties a person may have, it is true, for ‘parking’ as another person pointed out… hopefully there will be a solution for all very soon. I know that we have clear ability re ADA to speak to anyone, employer, rec center, store, etc to ask for accomodation, and that they must respond by opening the conversation. I wonder if that has traction in the US in terms of large chain stores esp. My experience in that area is only in regard to children and elders, and I’d like to hear from anyone who has had a sit down with corporate in some way.

          • archangel

            For readers here, leavening: Rx for anyone including those with these challenges would be evaluated person by person by a trained psychiatrist/neurologist, as there are no two people alike, and there is no one size fits all. Many persons with this challenge have no anxiety, but rather neural issues, that might seem to a person not trained, ‘like’ anxiety, but it is not. It takes a qualified physician of more than one specialty to look at each person carefully and with deep experience and training, and to first pinpoint the issues, which are often countervalent and multiple at many systemic levels before ever Rxing.

    • Peggy i just took a long read of your post and you have found a powerful voice… wonderful… thanks for shinning your light… much needed… really like this quote by Gibran:
      “Out of suffering have emerged the strongest souls. The most massive characters are seared with scars.”

      Khalil Gibran

  • David thought you would find this of interest concerning handicap parking jerky comments… cannot understand the condition of some people hearts, that is another kind of disability the one’s that spew it out on others without taking even an smidgen of self examination…

    • DavidRockies

      Ugh. My heart just sinks.

      It just brings to mind the old saying … Hurt people … hurt people.

      I have often (constantly) wondered just how broken a human being you would have to be to do what was done to me, or — clearly — what was done to this woman.

      With luck, Ashley Brady (the amputee from the story) will receive the support of the GOOD people of this country (and this world), and she’ll draw great strength from it, moving forward.

      Candidly …. that’s EXACTLY what I’m seeking.

      Ashley encountered one horribly broken individual. I encountered several dozen, followed by the institutions that are supposed to protect people like me FROM people like these.

      And rather than playing out in a day, mine played out over years.

      I am saddled with the pathological fear that … it WILL (not just ‘may’) happen to me again.

      Publicity … helps to reduce that likelihood, as society begins/continues to name AND shame these horrible abusers of the most vulnerable people among us.

      I need to get my story told … widely, broadly, and loudly ……

      • DdW


        Although this comment:

        Meaning …. nothing in this journey — the effort TO get my story told — has been cathartic or brought me healing. It’s rather like a person stranded on a deserted island: there’s no therapy in trying to signal ships and airplanes. The therapy comes in being rescued.

        Seems to be a little different from this one:

        Publicity … helps to reduce that likelihood, as society begins/continues to name AND shame these horrible abusers of the most vulnerable people among us.

        I need to get my story told … widely, broadly, and loudly …..

        …If it would help your recovery to publish a short version
        of your story here at TMV, I can check with the editors to see if that would be possible and perhaps help you edit the story.

        Let me know and wish you the best

        • DavidRockies

          Nah. They’re really not incongruous.

          The effort TO get my story told is like signaling ships when you’re lost at sea.

          GETTING the story told … widely … broadly … (eg, by a TV show or a newspaper/website of significant circulation) is like getting rescued 😉

          I did put the ‘summary’ live on my site. Here it is:

          I’d be grateful for any help.

          My sincere thanks…..

          • DdW

            Got it, David.

            I’ll get with our editors and see what we can do.

            I’ll probably need to be in touch with you. Could you send the editors your email address so they can send to me/


          • DavidRockies

            I can skip a step: neil zero five zero two at yahoo dot com


            My thanks.

          • DdW

            Got it.

        • Dorian you are a good soul… thanks for you…

  • Susan White

    I have Ehlers Danlos Syndrome, hypermobility type. I was born with it but had no idea as I’m the first in my family to be diagnosed. Many medical professionals know very little about EDS as not much is taught in many medical schools concerning connective tissue disorders. My doctors have determined that it came from my father. I’ve always been extra clumsy (poor proprioception is common with EDS, it turns out) and had other issues. My issues didn’t become severe until I hit my late thirties. Many people with EDS are ill much earlier in life. I experience multiple joint dislocations daily now. Chronic pain is often extreme as well. I’ve been diagnosed with fibromyalgia but for me it’s another symptom of Ehlers Danlos.

    EDS causes faulty collagen production. Because collagen is a protein that acts like glue to hold our tissues together, EDS can mess up just about any system in the body. GI issues are awful but it’s the dysautonomia that makes sitting down quickly necessary. Stretchy and weak blood vessels cause orthostatic issues that can drop me to the floor in an instant. I use a cane, and sometimes use a rollator walker. I’m doing my best to stay out of a wheelchair as long as possible. I have to see a cardiologist to make sure I don’t experience mitral valve prolapse, aortic dilation, and more. Organ prolapse and hernias are also common with EDS.

    I mention my story because EDS needs awareness. Many people may be suffering with it unknowingly. May is EDS awareness month. It’s an invisible illness that isn’t often discussed. Thank you for listening.

    • archangel

      Hi there Susan. I’m sorry to hear of your travail and like your attitude. Keep on. I’d like to suggest to you that, for May, say the first week of May, if you would like to summate your comment here, and add a bit more about this Syndrome that is also general medical information about where one might gain helps, any meds that might help, therapies that might help, and variations of the Syndrome in the young, midaged and the elderly, and what research might be about to be done, or has been done… we can see about running your article here. Your comment is very clear, pithy, and well said.

      Dont reply here, rather to be in touch, look to the ‘contact’ tab at the top of the masthead. There are many ‘hidden’ challenges for grossly underreported medical issues that do not show up in the press or in magazines on a regular basis. Thanks again.

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