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.

Emotional Agony

So often, I find myself belittling my emotions. This is another practice from childhood, and it can defeat me. It sets me up for failure, infects my heart with discord, and leaves me acting as an Angry Cripple. It is a challenge to fight the urge to tell myself how little my pain matters.

recently I have been displaying some of the life long bits of my soul here, many of which bear bruises and scars. This is painful. There are over 100 posts that have been written but you will never see, because they hurt too deeply. Some have been rewritten, to remove the deepest secrets, hiding them.

I realize this is not something that is unique to me, and is instead very common especially with Women who have disabilities. A disability is anything that interferes with functions of daily living, and therefore I do count mental health issues as disabilities. Not all disabilities are so severe that you alter your life and build it around them, but, that does not mean your reactions to those “minor” disabilities have any less validity.

I am writing this post, because I have heard five times in the last two days, read it twice, and tried to deny a growing anger that these words cause this lovely statement, “Just looking at you, I realize how little my pain matters.” This is crap. This sort of thinking and self devaluement leads you down the path towards self hatred. Self hatred is usually just a mask for inner pain, layered with anger and other poisons. Stop it.

I know, my body is a very good example of what you do not want to live in. My body is not your body, and although my pain is epic to me, there is someone out there who has it worse. I can name names, I know of faces, and there are people who walk, that still have it worse than I do. My pain is equal to yours, not less, not more. Equality in Pain is a concept that I learned about when I met a girl in the mental health ward. I was actually addressing the issues of my sexual abuse, and, she tried to empathize, revealing why she was there.

To me, the reason, not revealed because of confidentiality and respect of this person, is small. It is insignificant in my estimation of abuse. To her, it was earth shattering. Her world exploded. It took me a lot longer than my stay in that facility to understand the concept offered there. What we experience shapes our views. I cannot show you what I see, but I can try and paint a picture for you.

There is no reason to compare experience. Identical Twins rarely share the same outlook in life, every person is as unique as a snowflake or a butterfly. None are identical, despite outward appearance. It is rude to devalue them or yourself based on your own experience. This brings us of course to racism, ableism, and sexism.

When you say that racism does not exist, it is not truth. It is perspective. You deny someone else’s experience and that wounds you both. You might not understand their anger at your words, and they might lose respect for you. They may not understand too a lack of experience. This does not justify your denial of racism, but, the caveat is that you can learn from the responses to such statements.

Equality is in my estimation impossible. I am an idealist however, and fight for the ideal. Someday, I might just be proven wrong. I do not remember the author though I think it was Vonnegut, but I once read a science fiction story where everyone was made equal by devices that made everyone see, hear, and think at equal levels. They even ate the same food, very bland, all people were the same. This world was horrible, everyone was in pain, tormented, and unable to function.

This was normal for those characters, until one could not be contained. He was above average, so far so that the devices could not contain him. He became violent, lashing out to try and wake the people up. It did not end well. I think of this story often when I forget why people are different.

I do not want to be just like you, and you definately do not want to be made physically equal to me. I would not wish this body on anyone. I also wouldn’t trade it for yours. I couldn’t function with another body or mind, this is what I know. Your pain is pain. Your anger is valid. Your tears, your joys, all of them have as much importance as mine.

I have said this outloud to people, before. Trying to make them stop. Sometimes people devalue their pain in an attempt to pity me. I need no pity. I am a brilliant star burning in the sky, and I know it. No person needs pity. Those who pity are merely blind to the simple fact that everyone is valid, necessary, and capable of something important.

Before you protest, stating that people with cognitive disorders cannot be productive in society, let me correct you. Autism counts as a cognitive disorder, though, it makes my world absolutely brilliant and colorful. I couldn’t trade up, just down. Downs Syndrome doesn’t make a person invalid. Every person with Downs I have met experiences more joy than I can comprehend. You point out that those in vegetative states do not add anything, and, I say bunk. What they did before their brains were injured counts. Every living person has a right to fair treatment, health care, and love.

Emotional equality too, prevents the need to debase someone, to be better than they are. It merely exists, as we do. I exist. You have the right to exist. I am angry for those who cannot see it. I mourn, for this knowlege is powerfully freeing. I dance with butterflies, I sing with the birds, I exist merely as I am and can be nothing else.

You are valid. Go love yourself.

  • Polls

  • Ye Olde Archives of Fury

  • Top Rated

  • Top Clicks

    • None