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.

Ability and the Computer

My eyes are crapping out. I have a hole in the retina of one eye and neither can focus on anything near or far. I haven’t been able to read paper without great pain, and sometimes not at all, for over a year. Last time I saw an eye doctor she sent me to a specialist who ignored me, hurt me, and told me nothing was wrong and to ignore my degeneration.

The computer is a bastion of information for me. I have not seen the TV in a long time. When I really like a show I will risk the headache from eyestrain. Usually, it isn’t worth it. Even the computer is starting to fail me. Thanks to William Shakespurr, who turned out to be a Special Needs Kitty, I discovered a new command on my keyboard. I am sure everyone else knew about this but, hitting control and moving the mouse scroll button (that wheely thing in the middle) changes the text size in Firefox. Sweet heaven! I can actually SEE what I want to see. Not only does this magnify the text, without the annoying magnifier that Windows has Built In, but it magnifies the images too. Often without over pixelization, unlike the Magnifier.

If only I could do this to my TV. I am wanting to save for a huuuuge HD screen but, that is unreasonable at this time. My Person and I discussed it, yet with the economy he is having trouble finding a second job. My income does ascertain the rent but it is still $20 short. Without his work we do not eat. Without his work we do not have shelter. I hate SSI. They tell me I should be able to live just fine on it, but I do not.

My computer has helped me discover things such as, I should have a regular old wheelchair. Electric in my case is regular and old fashioned. I do not like the way scooters work. They are not really the proper adaptation for me. I may have to wait five years to get a proper wheelchair. The scooter turned out to be a good stepping stone.

I only discovered the notion of wheels on my butt when my friend came to town and brought his recently deceased mother’s manual chair and insisted we use it so that I could keep up. I actually did things four days in a row! Sure, I could not push myself, I tried and dislocated both shoulders. I had to be pushed and hated that, but I loved being conscious of my surroundings.

I even had enough mind power to rebudget my cash so I could buy a sword cane. That wasn’t quite enough to win me over. What happened next was a camping event with the SCA. There was no way up the hill to the camp where my friends were, I had to choose between volunteering at the event and actually seeing people I missed. I had to keep my word, and therefore I was stuck working. It was exhausting and I kept wishing for a way up the hill.

Another visit from a friend and we rented a wheelchair, also manual. I never considered the option of a scooter. This one was less comfortable, broke when too much pressure was put on the handles, because of a lack of a curbcut, but, I ran into that energy thing again.

My doctor looked surprised when I broached the topic. It took me almost another year before I had the guts, but I was dragging and my best memories in recent years consisted of rolling. I no longer shopped in stores that did not offer me an electric scooter, and I was missing out. I never did anything. Part of the challenges that would follow retained that sort of reality for me for a long time but I got my scooter. I was allowed to choose my model, and after a month of research on the computer I chose my Legend XL.

Now I miss it, and the computer helped me discover I am not the only one who has had a defective tool. I am working on finding the courage to ask for legislation mandating a quality level in assistive devices. Most are ugly, and most break fast. They are also over priced. Government regulation could make it where insurance isn’t needed for a simple bath chair. They denied me mine, a friend bought it so I could bathe.

I am free of misery now that my quality of life has increased, yet I am finding the loaner scooter painful. It hurts my body often, and has helped me seet he flaws in my legend. It will always be wanted, and if we can repair it the Legend will become a camping Scooter once I get my regular chair but I cannot handle the jerking of the tiller. Often it is torn out of my hands, or my back hurts from leaning forward to reach the supposedly adjustable tiller. It isn’t without great force applied. I do not have great force. The loaner does the jerking thing too, nearly breaking my thumb once. It also doesn’t handle little things like pebbles or cracks in the sidewalk well at all. The seat is the one off of my own scooter, required medically to be transferred. The little loaner scooter also fails to start on cold mornings. I miss my early morning events. I miss doing things because Loaner doesn’t hold a good charge. It almost died during a Toastmasters meeting between the lectern and my spot. Five whole feet.

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