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Thread: Not a cheery article on access but satisfying to read...??maybe from Huffington Post

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    Distinguished Community Member Lazarus's Avatar
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    Default Not a cheery article on access but satisfying to read...??maybe from Huffington Post

    Disabled People With Chronic Health Issues Face A World Of Inaccessibility
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    Ace Ratcliff

    A depressingly high level of inaccessibility has become the norm when it comes to 21st century medicine.
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    A depressingly high level of inaccessibility has become the norm when it comes to 21st century medicine.
    I visit my pain doctor on a monthly basis. Sometimes I get trigger point injections ― shots of lidocaine into my muscles to stop them from spasming, a frequent occurrence due to my degenerative collagen disorder. Hypermobile Ehlers-Danlos syndrome also causes my joints to frequently dislocate, randomly and without warning, causing severe and constant pain.

    But the main reason I make this 40-minute drive every month is to pick up a paper prescription for my pain meds; theyíre considered a controlled substance, so the law forbids me from refilling them digitally. And every time I make the trip, Iím reminded that even the medical world isnít designed for sick people like me.

    It starts when I pull into the parking lot and decide to leave my wheelchair in the car, even though Iíd obviously rather use it. It doesnít matter whether my hips are dislocated that day or not; I never use my wheelchair here.

    The building has an elevator I can take to the second-floor office, but it shudders and judders the whole way up, so I use the stairs. Iím then met with two heavy glass doors, and if I were sitting in my chair, the handles would be too high to reach, the doors too heavy to hold. The fact there isnít an automatic door opener here has always struck me as strange.

    In the waiting room, thereís no space to park myself when seated in my wheelchair; Iíd end up inevitably being tripped on. Plus, the doorway between the waiting room and exam rooms is so narrow that wheeling through would be an impossibility (and no automatic door openers here, either). The exam tables arenít equipped to motor down to my level, which means Iíd have to stand up out of my chair to clamber onto the table. The entire experience would be an effort in exhaustion and inaccessibility, so I tough it out on foot instead.

    In many ways, Iím fortunate I can decide to leave my wheelchair in the car, because a depressingly high level of inaccessibility has become the norm when it comes to 21st century medicine. As a partially ambulatory disabled patient with a host of chronic health conditions, I regularly run into what feels like a never-ending gamut of issues every time I visit one of my practitioners. And Iím far from the exception to the rule.

    Iím fortunate I can decide to leave my wheelchair in the car, because a depressingly high level of inaccessibility has become the norm when it comes to 21st century medicine.
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    Inaccessibility issues often start long before disabled patients make it to their appointments. I can drive myself most days or schedule my appointments when my fiancť can drive me ― and good thing, because I am never asked or given recommendations about transportation (except to be told I canít drive myself home post-anesthesia). Patients with disabilities who arenít partially ambulatory like I am often have to figure out the logistics on their own, which means complicated mass transit systems or paying out of pocket for paratransit rides. Paratransit riders often have to book 24 hours in advance, usually by telephone, and most agencies make riders pay with cash or a paper voucher. If a patient is d/Deaf, they might need a teleprinter/teletypewriter ― a specialized text telephone that doesnít come cheap ― to schedule the ride. Requiring cash payment means disabled people now have to take the additional step of making a separate trip to the bank in order to be able to pay.

    And before you suggest them, ridesharing options like Lyft or Uber are a far cry from a solution. Theyíre often either inaccessible or rife with discrimination. Uber was sued in 2018 for its fleetís lack of wheelchair-accessible vehicles. Another 2018 study found that Lyft provided a wheelchair-accessible vehicle in only three of 65 attempts to request one ― a disturbing 95 percent failure rate. Uber managed only 27 out of 49 attempts for a WAV. In all, researchers located a WAV in just 26 percent of attempts (compared with a 100 percent success rate for non-accessible vehicles).

    Medical offices themselves are an issue, too, as is the equipment inside them. Disabled patients often have difficulty using X-ray machines, rehab equipment, scales, scanning devices like MRIs and even just getting up on exam tables. Federal civil rights laws require medical offices to be accessible, but few are ó and the ones that exist are hard to find. A 2012 study of 2,389 primary care facilities in California found that a mere 8 percent were equipped with a height-adjustable exam table, and less than 4 percent had an accessible weight scale. A 2013 telephone survey of 256 specialty offices across four U.S. cities for a fictional wheelchair-using patient found that 22 percent of practices reported they couldnít accommodate the patient. Amazingly, the clinicians who refused to accommodate the fictional patient also failed to recognize that their refusal was illegal under the Americans With Disabilities Act.

    If you arenít disabled and havenít thought about these issues before, itís time to take a look around. After all, disability is eventually guaranteed to all of us.
    Those very same ADA laws also mandate that hospitals receiving federal funding provide deaf patients with help to ensure effective communication. However, while I frequently see hospital signs declaring patients have easy access to other language interpreters, Iíve never seen one mentioning the availability of an American Sign Language interpreter. And, as a patient, Iím never asked about any hearing issues, even though Iím hard of hearing as a result of jaw surgery in 2013 (and far too many rock concerts without earplugs). Iím rarely offered alternatives to spoken communication, like written pamphlets, and I am never asked about learning disabilities like dyscalculia, dyslexia or auditory processing disorders.

    Doctors carry their own deeply ingrained assumptions about disability, and non-disabled doctors simply lack the understanding of what living with a disability actually entails. Research has shown that, as a result, disabled patients receive inferior health care, including less information about prevention and fewer screening tests, such as Pap tests and mammograms. A 2006 study showed disabled women with early-stage breast cancer were less likely than non-disabled women to undergo breast-conserving surgery. Those who did were still less likely to receive standard radiation therapy. Unsurprisingly, disabled people diagnosed with such cancers were significantly more likely to die as a result.

    Patients with intellectual disabilities (whether the diagnosis is accurate or not) are significantly more vulnerable in medical settings than the general population, and their decreased life expectancy reflects that reality. Studies show that less than 20 percent of medical schools teach their students how to talk with intellectually disabled patients about their needs. Delays or problems with diagnosis or treatment are the No. 1 reason why individuals with intellectual disabilities die at least a decade earlier than non-disabled patients on average.

    Inaccessibility and ableism are the name of the game when youíre a chronically ill patient with a disability. And as with so many issues involving disabled people, we have to start at the beginning to enact fixes. Disabled people need to be involved from the ground up. This means medical schools need to offer clear instruction that teaches future doctors how to interact with and examine disabled patients, but it also means that medical schools need to be more accessible when including and training disabled students to become future doctors. More disabled doctors mean a more widespread need and appreciation for accessibility ― for patients and for those giving care, too.

    Inaccessibility and ableism are the name of the game when youíre a chronically ill patient with a disability.
    As usual, this means our world as a whole needs to place a much higher focus on making the world more accessible. Iíve written before about how music venues and airline travel are widely inaccessible to wheelchair users, and medicine is no different. Our society hasnít yet insisted upon accessibility as a bare minimum, and disabled humans suffer as a result. Itís an ouroboros of epic proportions: Disabled people are forcibly excluded, which is why non-disabled people donít think to include us. It often starts in preschool or elementary school, when the buildings are inaccessible, and continues through high school and extends into higher ed. When we canít pursue higher levels of education, we are excluded from job opportunities. Exclusion from job opportunities means we arenít the ones in medical school, insisting upon education about how to properly treat us ó and we arenít the architects helping design accessible hospitals or doctorsí offices, either.

    Disabled people make up 20 percent of the U.S. population, but 20 percent isnít enough to enact change, no matter how loud weíre yelling. We need non-disabled people to join the rallying cry. If you arenít disabled and havenít thought about these issues before, itís time to take a look around. After all, disability is eventually guaranteed to all of us. Old age will alter your mobility, your functionality, your ability to move and your autonomy. At some point, the heavy glass doors at your doctorís office will stymy you, too. Wouldnít you rather the world be an accessible place before that happens?

    Ace Ratcliff lives with hypermobile Ehlers-Danlos syndrome, dysautonomia and mast cell activation syndrome, which all make for a particularly rebellious meat cage. Her advocacy is centered on intersectional feminism with a focus on disability rights.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member SuzE-Q's Avatar
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    With an aging population and baby boomers now at retirement age, maybe strength in numbers will help to get needed changes in place.

    It's just unconscionable that so much of the world remains inaccessible to so many. 20% IS a huge proportion!

    Thanks, Laz!
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    Distinguished Community Member agate's Avatar
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    If medical providers are hoping to be shed of their more difficult clients by not tending to making their premises accessible, they're being very shortsighted, I think. Disabled people have some money to spend on medical care, even though many of us aren't rich, and we just might opt to spend our medical care money on a more accessible medical provider....
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member Sunshine's Avatar
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    There are people that go to doc offices, find an ADA infraction and then sue. That’s how they make a living. ...they’re not disabled.

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    I experienced horrible inaccessibility when I went to a cardiologist. The stairs were steep as heck and on a angle. It was like climbing a mountain! When I get into the office I'm completely out of breath and the TV is blasting which makes my spasticity go crazy. Then the doctor tests my blood pressure and tells me it is high. I look at him and think "Dude, your entire office would give anyone high blood pressure!" Then he doesn't bother to give me the full details of one of the tests and uses that phony way of ableist manipulation where he says "Oh its your CHOICE." when I try to say what my concerns are. His intern or whatever also falsely believed I had a stroke so I was like "What?!". Needless to say I never went back to this idiot doc.
    I'v also had physical therapy students come up to me at my various film screenings etc and ask me questions about disability like how mobility aids are properly used on a permeant basis and inform me that they don't receive any school preparation on what its like to live with permeant disability such a stroke, cerebral palsy, and amputation. If the medical fields were accessible to crutch users I would have certainly tried to get a career in that area. The main problem is that there are certain physical fitness requirements and field study requirements in medicine that make it impossible for most physically disabled to enter the field. There are exceptions like Dr Jen Arnold from "The Little Couple" of course. I don't want some affirmative action set up to get more disabled doctors into the field however since I want the most qualified people as Drs but some changes to how medicine is taught should be considered.
    I disagree with the article writers assessment that able bodied people don't want to include us, granted there are some really ablest people out there but most people will accommodate if given resources to do so in my experience.

    Sunshine, yes a lot of the lawsuits in my state are that type unfortunately.
    Last edited by funnylegs4; 11-11-2018 at 02:40 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    Distinguished Community Member nuthatch's Avatar
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    Just a reminder to please break up your posts. I had one heck of a time reading this thread!

    I an amazed at how inaccessible doctor's offices are. One office had to let me in a separate entrance to accommodate my wheelchair, I had to wait in a hallway, blocking the regular exit route, then the nurse moved furniture ahead of me as I made my way to the tiny, crowded examining room which had to be rearranged! This happened every single visit! I do not go to that doctor anymore.

    My neurologist's office was in a newer building with wide doorways and hallways. Then he moved his office to an older building with all the problems. The building burned down, forcing him to move again to a great new building that even has automatic doors! Finally!

    Going to get lab work done is just as bad. I hate going into any waiting room and having to park my chair in the middle of the room because there is nowhere else to "park", especially if the chairs lining the walls are occupied.

    There was a lawyer in this state also who went out looking for public buildings violating ADA laws. Lots of lawsuits. I have very mixed feelings on the subject. If there were more ADA inspectors no one would be making money on this, but there just aren't nearly enough.
    Last edited by nuthatch; 11-12-2018 at 01:59 AM.

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    Distinguished Community Member Sunshine's Avatar
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    Yes funnylegs ! The loud blasting of FOX news at docs office, I bring headphones to docs office. And at the Fox News office I ask to sit in a quiet room.

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    Quote Originally Posted by nuthatch View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Just a reminder to please break up your posts. I had one heck of a time reading this thread!

    I an amazed at how inaccessible doctor's offices are. One office had to let me in a separate entrance to accommodate my wheelchair, I had to wait in a hallway, blocking the regular exit route, then the nurse moved furniture ahead of me as I made my way to the tiny, crowded examining room which had to be rearranged! This happened every single visit! I do not go to that doctor anymore.

    My neurologist's office was in a newer building with wide doorways and hallways. Then he moved his office to an older building with all the problems. The building burned down, forcing him to move again to a great new building that even has automatic doors! Finally!

    Going to get lab work done is just as bad. I hate going into any waiting room and having to park my chair in the middle of the room because there is nowhere else to "park", especially if the chairs lining the walls are occupied.

    There was a lawyer in this state also who went out looking for public buildings violating ADA laws. Lots of lawsuits. I have very mixed feelings on the subject. If there were more ADA inspectors no one would be making money on this, but there just aren't nearly enough.
    nuthatch, I'm so sorry. When I copy and paste from my word processor sometimes it removes the separations in the text. I will be more careful. Yes whether the building is old or new makes a HUGE difference. Having inspectors instead of suing would be great.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    Quote Originally Posted by Sunshine View Post
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    Yes funnylegs ! The loud blasting of FOX news at docs office, I bring headphones to docs office. And at the Fox News office I ask to sit in a quiet room.
    Sunshine,My doctors always blast local news. Unfortunately on my appointment date they blasted a story about a kid being hit by a car which was so heartbreaking. I have seen Drs office and airports blast CNN but rarely do I see Fox News blasted. I'll bring headphones next time. The sound issues wouldn't have been as big of a deal if it wasn't compounded with stairs.
    Last edited by funnylegs4; 11-12-2018 at 08:21 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    Distinguished Community Member agate's Avatar
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    funnylegs, I must be very lucky. No doctor or clinic that I go to blasts anything. I don't believe there's a TV in any waiting room. There are lots of people absorbed in their phone conversations, though!
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
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