Sharing the Dream

I have a dream. It started small, with the idea of teaching other women with disabilities how to get their doctor to adapt to their needs, to make certain that they have proper medical care and it grew. A part of this is the rumor that in California there are accessible facilities for medical care. This access should be for all women and men with disabilities as well as those who are aging. A second portion is a discussion I recently spent two weeks taking part in. The third part is my own experience and the frustration that is omnipresent with my current medical needs.

I am sharing this dream with you for two reasons. The first is that I want your input. I am not an expert on all disabilities and I want to make this dream a reality. The other is that this will be my platform when I make my run for Ms Wheelchair USA. So, here it is, my dream.

I want to create not just an accessible doctor’s office but an accessible facility that has several purposes. First and foremost I want an accessible mammogram, one where you do not have to call, beg, and push to get access but where it is expected that you will need access. This will be furthered by a program to teach you how to adapt to your bodily changes and limitations while being able to fulfill the self exam for breast health. If you cannot adapt, either due to paralysis or other limitations then I want to offer the option of having a doctor or nurse perform your exam for you. Breast cancer risk does not magically vanish the minute you are suddenly disabled. It often goes up!

This goes further, I want accessible exam tables and facilities to offer every woman regardless of function and mobility a pap smear. I have an annual cancer scare, something tries to trick us into thinking it is cancer yearly. This year’s cancer scare surrounds my pap and it’s abnormal results and other tests that scream, “You might have cancer!” I am more worried about the high table, embarrassing lack of hospital gowns that actually fit, and my physical issues hampering the test than the actual possibility of cancer. I am loathing the idea of half climbing half being shoved up on that table, half naked and without any chance at privacy because I need help at times to even move my hips. There are accessible tables. Other forms of accesibility will be needed. I want to hear from any persons of short stature, what are the needs you face in the doctor’s office that are not being met? Even the most accessible table for a tall person will fail you, so please tell me what you need so that you are not excluded from my dream.

I want accessible facilities for rape victims with either severe injuries due to the actual rape or a previous disability. Writing these words has me panting with fear, but, how many women could be protected with evidence that is not obtained? There is enough of a violation with in rape itself, but being violated and treated like you do not matter after is a crime as well. This alone could be my platform focus, this alone could impact the lives of countless women. Accessible rape kit access with proper training for those taking the kit is a must. this is the part of my dream that is frightening, this is the part of my dream that feels the most out of reach. I must reach this goal however, for every victim and survivor that exists now or may exist.

I also want a center for adaptation. The Center for Adaptation would include a kitchen, a bathroom, and other areas that the once-abled take for granted. I still have not managed to cook a meal without harming myself in years, but a place where I had the safety to learn without being in danger of literally killing myself would help. This adaptation center must include potential assistive devices so that before the money is spent by the individual they know if the device will work. I wasted so much money on items that I cannot even use. Everyone does. Most persons with disabilities or freshly disabled persons have a very limited income, therefore this is a key component to creating universal access. Imagine learning how to cook around your limited energy, ability, and strength? Imagine learning how to clean again, and imagine too learning other things such as crafts, or finding ways to adapt so that you can create art? Dream with me and see it, a place of learning for all levels of ability.

Not just learning but socialization. I want people of all ability levels to commune together. There need to be varying support groups, socialization groups, and even a place to coordinate activities for the single individual and the couples. There needs to be a safe place to discuss sex with in ability, there needs to be a safe place where intersetion occurs. If you are gay, bisexual, a lesbian, or a transgendered person with a disability you deserve this just as much as someone who does not overlap two subgroups with in the realm of minority. The able bodied need to be welcomed here too, so that they can learn, assist, and so that there is a lack of segregation.

There needs too, to be a place to work with Service Animals. This facet will have to have answers to questions about the legalities of service animals in the given area, certification challenges, and training suggestions. Although it will not be a place to get a service dog, there needs to be a place where safe support can be found easily. Safe support that can come and help you advocate, safe support that teaches you to self advocate, and safe support for the process of accepting your animal partner.

Less medicalization of life needs to happen, and the focus on that aspect is a place to find good fashion, perhaps this could even become the funding source for my facility. The fashion needs to be adaptable to the wheelchair users needs, most likely this will require custom tailoring. The clothing needs to be affordable but also fashionable. Persons who have disabilities cover all age groups and the institutionalization of clothing is unacceptable. The clothing must also be in a broad range of sizes. Just as wheelchairs need to fit everyone from the small child up to the very large adults, the clothing must as well. Giving a place to access good, quality, stylish clothing for men and women with varying abilities will be a huge part of this, simply out of my own desires. I desire affordable clothing that works with my ability. I do not want to trip over skirts that are too long, I do not want to have my sleeves caught in my wheels if I use a manual chair, and I am presuming this is a universal frustration.

There need to be classes as well to train those with degenerative conditions to adapt, or those with compound disabilities to adapt. Perhaps the adaptation center is a new spin on the idea of an accessible home to learn in, yet, the focus on this portion includes teaching skills you might not have. What brought this to mind is my own degeneration. I lost my ability to walk and my sight is endangered. What adaptation can I have if I cannot see to drive my chair? I must learn and there needs to be a safe place for this. There needs to be a place where it is safe to feel the fear, the hope, and a place where there is hope. There is too little hope for the disabled demographic in this world.

A part of preventative care is dentistry, though I have yet to find a dentist who can work with my limitations. There needs to be a facility for dental care. I have a cavity I cannot get tended due to my combination of allergies and inability to bend backwards in their chairs. This cannot be. This is discrimination, yet to stamp out discrimination there needs to be action. If the facility cannot have a dentist, then it needs to have an office where accessible vision and dental care is listed, where referrals can be given, and it needs to be a place where there is acceptance that every body has a different need.

Disaster Safety is also a concern. During the disasters that hit the world, such as Hurricane Katrina, the disabled are often left behind. Their families may stay so that their loved ones do not die alone, and therefore these devalued people are murdered. It is murder to leave someone behind because it might be hard to deal with their wheelchair. A part of this facility needs to house a program that teaches people how to advocate, adapt, and prepare for emergencies. This program also needs to teach FEMA and other rescue organizations how to rescue the disabled. We are people, we deserve life, and being abandoned because of a wheelchair or cognitive disability is murder. It can be helped, it can be changed.

A lot of the focus here is on prevention and adaptation. My focus is not to cure disability, to wipe it out. That is impossible and I have gained from my own limitations. I cannot imagine a world without Autism as being beautiful, for without it I would not exist. Therefore the focus needs to be on preventative medicine, there needs to be a focus with in the facility on adaptive medicine, and there needs to be a focus on demedicalizing the bodies that have limitations. There needs to be a personalization of existence. I exist beyond my disabilities, though they are a part of me. We need to foster acceptance of self, of difference, and we need to offer a safe harbor for all people with all abilities to commune.

A lot of people are unable to work, are fighting for government assistance, and are dying without durable medical equipment. I want to offer rentals, loaners, and at times even the purchase of needed medical equipment such as CPAP machines, wheelchairs, and walkers. These are just examples. There would be a qualification process, and yet the freedom I felt that first time I sat in a manual chair and had more than three hours of coherent function haunts me. I have nightmares of being trapped without my chair now, I have nightmares that others feel that same terror. Those nightmares are realities. This program could use older equipment that was donated, purchased equipment, and could perhaps eventually include low interest/zero interest loans with minimal payments to allow people to obtain equipment. This could help those with a copay and a minuscule income to make ends meet. This could help someone who is choosing between homelessness and a wheelchair to get the chair and keep their home.

A second facet on employment is access to workforce training. There are already facilities yet at times access is denied based on a lack of visible potential, so, I want to coordinate with them to try and educate and prepare those who want to work but are being told they aren’t worth the training. An entire segment of this facility needs to be coordination with existing organizations to get people what they need, to get people connected with the programs that exist. A lot of people who ask me for help do so because they cannot find programs that fit their needs, even when they exist. A hub in the network could make their impact broader, while in a way delegating some of my dream over to their offices. I know one facility cannot possibly do it all.

This is my dream, this is also why I was so quiet this past week. I was dreaming, trying to put into a coherent idea what is needed. This facility will need funding but the insured can be charged. I do not see this as a fee free environment but money should not cause a person to not be able to participate. If a person can pay, or if their insurance can allow coverage then they should pay. Much of what is offered should be covered under Medicaid/Medicare and other insurances without issue. The rest could be funded via donations and grants. I have no idea what I would call this facility yet, but, that is not the most important focus at this time. Branding must come after a plan for action is laid out.

Share the dream. Share what you see as a need. Please feel free to pass links to this post around, I want to offer a taste of freedom to a set of people that anyone can join, to the only equal opportunity minority. If we band together, we can change the world and create universal access. This plan is flawed, this dream is imperfect yet it is merely a start.

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4 Comments

  1. I think this is a great dream to work toward.

    It sounds like right now you are mostly familiar (quite understandably) with the barriers facing people with mobility-related disabilities, but it also sounds like you are interested in learning about cross-disability issues.

    For deaf people, the biggest barriers often revolve around communication issues. In theory, the Americans with Disabilities Act ensures our right to communication access in medical settings. And in some contexts it can work out all right. One particular hospital in the DC area that I use the most frequently MOST of the time does get an interpreter for me when I ask. On a few occasions, they have even offered when I forgot to ask (which is rare in most other contexts!) But other hospitals, and especially private practice doctors, often refuse. Once I went with my partner across the country for her to have surgery. I arranged with the hospital — or so I thought — several MONTHS in advance that they would have an interpreter during the pre-surgical check up, and also during the surgery itself, so I would have full communication access to everything that was happening with my partner medically. They did not bother to inform me until we literally walked in the door for the pre-surgical meeting that, oh, by the way, even though the doctor was willing to get an interpreter, the hospital had refused to pay for it (in total disregard of the law) and therefore there was no interpreter. I was so furious. Even though this was routine surgery (in the sense that this doctor had done dozens like it with no prior complications) it is still nerve wracking enough to have your loved one go under the knife without also having to deal with the stress of, “What if I miss something important,” or “What if I have to ask them to repeat and they don’t take the time for me” Even in ordinary situations, sub-optimal communication can be stressful. Even with perfect communication, waiting for your partner to come out of surgery is stressful. The two together is stress multiplied.

    Talk to 10 deaf people about medical situations and communication issues and you would probably hear 50 stories like this one, associated with varying degrees of infuriation. Lack of communication means if a doctor tells my partner, who is still bleary because she is recovering from her latest seizure (she has epilepsy) to do x, y, and z to speed up her recovery, I’m not going to be able to help my partner remember those instructions afterwards. Or if it’s me receiving the instructions, I might get them wrong. So there can be real medical risks involved sometimes with the willingness of medical professionals to impose poor communication on deaf patients for the sake of saving themselves a few dollars on interpreters, or because they “don’t know how to get an interpreter” (which may be a policy level issue that needs to be addressed at the policy and procurement level), etc.

  2. I absolutely want to learn about other disabilities and their limitations. This is simply because I believe intersectionality is the key to our freedom. If every element of disability or even oppressed persons banded together there would be no denying us as long as we were truly reasonable. Reasonable does not preclude being angry at the treatment we recieve or the danger to our health.

    What I am curious about is this, as a Deaf person do you find the inaccessibility of the world in general causes the Deaf to create their own internalized community? I have noticed this with adult Autistics, the mobility impaired, and other disabilities including blindness. I believe this is also a side effect of the chronic warehousing that we still suffer from.

    In theory the ADA is a great concept, but no one knows how to enforce it. Locally I had to harass the mayor, something I am quite proud of, for over a year before he would train the police on how to respond to a violation of the ADA. I am now working on getting them to acknowledge that a person with a disability is able to tell when they are being discriminated against, because of course any impairement is seen as total impairement.

    I do know some sign language, and I remember how wonderful it felt to learn from a deaf classmate. Her mother came in and on Fridays for my entire 5th grade year taught us some of the basics. I do not remember all of it but I can finger spell and I can ask you for rat’s milk. (I thought the idea was fascinating, sorry about that.) If I can retain enough ability to communicate with you via ASL, why can’t we try and impliment in every school the classes as well? English is an accepted language and is taught, I can have my nieces and nephews take Spanish. Perhaps we can push for this to become a class that is at least availible.

    It shouldn’t be a rarity for you to have communication. It shouldn’t be required but merely expected and should be taught as a part of a doctor’s medical education. That is what I believe, and that is also my ideal goal for some of my advocacy.

    My question about your communication with the doctors is this, would they be able to write their detailed instructions down? I myself have seizures and I know that they can be debilitating. I lose days at times where I functioned just fine on the outside but my mind was lost. I know this is not enough and you probably already try it, but, it is my nature to try and fix all flaws.

    Do you know if any advocacy groups could also put together a list of interpreters in your area? The interpreters would be able to get more work and this excuse, which is likely something that could be taken care of by the hospital’s Board of Directors very easily, would no longer be an excuse. I am sure you work with several such groups, so it is merely a suggestion you have probably run into before.

    I have also noted that the US’s medical system is built on a system of spending less now, though that can cost thousands and millions later. I am sure you see this as well. If something happens to you or your partner based on this obvious and gross negligence and you sue, doesn’t that negate their momentary monetary savings?

  3. I like the new logo for your blog!

    Most metropolitan areas have sign language interpreter agencies or even more than one, plus there’s a national registry of sign lang interpreters, so anyone who googles or otherwise investigates can locate interpreters. The difficulties that come up, particularly for doctors in private practice or places in rural areas (where the nearest s.l. interpreter is several hours away) is that they try to claim that it would be an “undue burden” for them to pay for an interpreter financially, which they think gives them a legal out (this IS a loophole in the ADA — if they try to make this claim, then you pretty much have to drag them to court and argue out there whether they can legitimately make this claim or whether they’re just making excuses)

    I think what we need is, not simply a list of interpreters (which, with sl interpreter agencies, we don’t really need) but a way to tackle the financial side of it which is usually the bigger stumpling block. I think the law should be modified to require all small and maybe medium sized businesses, including private practice doctors, to pay a montlhy “disability accommodation fee” into a common, national “disability accommodation fund.” Then any business that has a sudden need to spend money on disability related accommodations in order to provide disabled consumers with access can draw upon this fund. Presto, no more excuse (at least financially) for doctors to claim they “can’t afford” to pay for interpreters. They’ll still be paying for them, but a little bit at a time rather than all at once which I suspect is sometimes the real barrier.

    It would be a lovely idea if all doctors could be fluent in ASL, but honestly I think pie in the sky. Not everyone has the same capability at acquiring new languages, esp later in life (after age 5). My parents, for example, are intelligent people (mom = phd, Dad= all but doctorate), but even though both do sign well enough to communicate with me, I wouldn’t consider Dad qualified to communicate solely in sign language to your average deaf patient, “You need to do [complicated instruction X] before you do [complicated instruction Y] or [Y] will not be as effective, if you need help learning how to treat yourself following [instruction X] then Nurse [so and so, not nurse such and such] can advise you.” He just can’t sign that well. Mom maybe could, but probably primarily with deaf people who, like me, can handle reading signs in English word order (rather than in proper ASL syntax with grammatical markers, classifiers, etc.) There would always be doctors who, no matter how hard they try, would just be too poor signers to really handle complex medical communication on their own. Plus, it doesn’t solve the problem for deaf people who don’t use sign language as a key mode of communication (not all deaf people do!)

    Plus, deaf people aren’t the only people who have communication issues in medical settings (or elsewhere). Many immigrants have similar type challenges and deserve access too.

    What I’d like to see is

    1. Encourage more people who are already billingual (in whatever languages) to pursue medical studies, perhaps by targeting scholarship programs at them

    2. Yes, encourage more doctors to study other languages to whatever level of fluency they can attain, perhaps by paying the expense of their language courses

    but there would still be a need for interpretation services.

    Some high schools and certainly some colleges in the US do already offer ASL classes. My high school did, and I imagine still does. Yes, would be good to have more of these. And I’d also live to see more bi-lingual classrooms offered not only to Deaf students (the increasing practice today, though not universal, but that’s a whole ‘nother topic) but also for hearing students.

    For Deaf people, I think a more important motivation for forming a Deaf community is not simply the inaccessiblity of the “hearing” world (though that does contribute partly) but because it is a linguistic and cultural community with it’s own norms and values that bands together for the same reasons that any linguistic community bands together — so we can communicate in a shared language that for some Deaf people comes more naturally than the dominant language. I think there would still be a Deaf community even if society was more fully accessible.

  4. You make some very valid points here, and prove further that intersectionality cannot be within just the disabled community but should branch out with other minorities. I know that right now is also pie in the sky, but a lot of things we take for granted now were once considered impossible, including our conversation here.

    Honestly I am blatantly jealous that your education gave at least the hearing students the option of learning other languages, the languages that I have absorbed I had to seek out and try and learn either on my own, via the internet, or by communicating with people who happen to have English as a Second Language. I do agree interpreters should be needed and I love your idea.

    I think that another facet of this fund could also be turn around with a fund to assist with durable medical equipment that insurance is not obligated to cover and therefore won’t. This would be more of a charity aspect but, even getting a ramp can be impossible for people new to their wheelchairs or not so new, that same idea has universal applications, which makes it all the more enticing.

    I do forget not everyone can learn the same things, my math skills are about on target for second grade and maybe third grade (I’ve been working on it) and this too could be counted as a rather universal language. I didn’t mean to imply we could solve the problem, but merely that it would help. I must admit understanding the language as intimately as I do, I still find the concept of going to the doctor terrifying, as they are fallable. I cannot imagine the added stress of not knowing if they will be able to communicate with you. I would probably never go unless I was sure I would die without medical care.

    With that in mind, does this also effect the general health of our community? Not everyone who is ESL is an illegal immigrant (just by having this conversation I know the Trolls are sniffing) and many may be merely raised to speak their parent’s native language only running into English upon entering primary school. The school I went to actually had such a problem with this that I was exposed to Spanish as the teachers had to use both Spanish and English to teach. By the time I was 13 however this policy was changed. That was my first taste of blatant racism. They began to segregate the ESL students, even on the playground and at lunch, we would be punished if we spoke to them, and I began to see a barrier being built with in the community despite everyone being a blood relation. This was lead by a tall, blond, white woman who threw her privilege around at every opportunity. Despite being in the literal minority with in the town, she still managed to use the cultural majority in this country to her advantage.

    This by extension is likely something you have faced by having your own language. I cannot imagine how difficult it must be to do certain things I take for granted. I admit that I cannot put myself into a world with no sound. I live with a lot of technical silence but I can hear the high pitched whine of something new today (it makes my eyeballs jump funny), I can hear the children playing, fighting, and generally being shrill outside, I can hear my cats walking as the carpet lets out a soft rustle when they do, and even the traffic and sirens that are omnipresent at this location. My computer adds to the plethora of sounds that I ignore. I do not know if sound can change your perspective mentally but I would presume so. You may for example not care about the sound pollution ordinances, or you may still care based on the fact that everything can be vibrated by car speakers if you turn them up loudly enough.

    Have you identified any effects that are inherant with your inability to hear? Is there a cultural change that is based on this? I am going to risk a presumption and ask if art is prized more because it is one of the availible mediums to communicate your inner creativity, as words alone can be rigid. As people get headaches from too much sound can you be overwhelmed by colors? I can and I can hear but, is it something that is considered normal for a nuerotypical brain with deafness? I apologize if you are also Autistic and do not know.

    I think the world can never truly be perfectly accessible, there will always be flaws but that is due to our human nature, and yet there is the chance for change as long as people can see the universal nature that is human. If the cave men can adapt to disability, protect children who were born different, and have a functional society, what imaginary barriers are we taught that make this unacceptable now? I am still excited when I think of the find of a preteen Neaderthal skeleton that happened to prove Downs Syndrome existed with in the primitive society. We are taught that our ancestors are so savage, yet, they may have had something we lack. They may have had a community that willingly took care of the disabled, and protected them. This would allow them to gain from the skills that people such as you or myself have, and are in this era ignored blatantly.

    You might not know the answer to this but, just as you face issues related to your deafness with medicine, and I my physical ability (inaccessible doctor’s offices are way too common and that’s just starting at the doorway) what challenges relate to blindness? I suspect that the hospital will not have a braille printer on hand to provide medical instructions in the language needed for a blind person. It wouldn’t be too difficult, I may have just imagined this but just as we can print with a lazer printer, the computer can likely be made to print in braille with a simple translation between the languages. A copy in both visual and texturally sensitive formats could be provided.

    I do know if I am to build my Accessibility Centers, the actual follow through would require a quorum discussion by person’s with disabilities so that there could be a way to cover the needs of all not the needs of the mobility challenged and medically fragile. Some of this dream could even help with some of what you post above, with doctor’s being encouraged. these centers could perhaps be the source of the scholarships encouraging medical students, and showing the medical community that they can adapt.

    How much stagnation do you see with in the medical community? I see a great deal, from my perspective. A lot of great science is being used elsewhere but with every doctor’s visit I must first remind them (despite their supposedly reading my chart) about every aspect of my being, I must keep them on focus as my unique gathering of medical challenges draws them in to want to change me and dissect me, and then I may actually get what I need though most of the time it ends in another diagnosis of another rare and usually genetic condition that cannot be treated but doesn’t overlap significantly with my other disabilities. The fact I can have the diagnosises, followed up with second opinions though is a bit of privilege in and of itself.

    Do you think that this dream can be taken out into the world not just our country as a beacon of health for all? Ignore the politics involved, but do you think that taking this to other countries would be an act of my American Privilege, cultural sabotage, or would it be giving people the benefit of the doubt and showing that medical care with an accessible standard is a universal need?

    Sorry for rambling, I am going to post this and go sign my new lease!


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