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.

The Cripocalypse (Trigger Warning)

I just woke up, two hours earlier than normal and I have had a vision. A vision of what the privileged folk who refuse to see me as human might see. In truth I was thinking about my father, and how he died. I then realized he suffered for over a year with a bad heart, which means I really need to be careful and have mine checked. I will. My doctor,w hen I tell her how he died will step right up and lob referrals out into space if necessary. My father was one of the most evil persons I ever met. His level of hatred wasn’t just his children or wife, but every man, woman, and child of color, or who was independent, but especially those that over lapped. He told me often about how disabilities worked. None of it was true, and thankfully I discarded his notions before my own disabilities began to force their way to discovery.

The Cripocalypse:
It begins with one, one gimp who refuses to walk. They are just lazy you see but laziness catches like disease. Soon his children refuse to walk. Then they begin to use wheelchairs. Sure some folk might actually need them, like the veterans who let the enemy blow off their legs. After that, come the walkers, they will walk but not if they can’t lean on something. Can these people be more lazy? Not only are they lazy but all of the cripples are mexican or black. You don’t see many white cripples, and if you do they had sex with a (insert racial expletive) cripple and caught it. That’s right, wheelchairs are contagious. Someday, every man will be in a wheelchair, unable to move his body because we didn’t kill the damned cripples.

Yes, he was a bastard. I once made friends with a girl in his apartment, after he and my mother split but before the divorce. He lived there a year before he decided to see who I was playing with when I should have been cleaning and making his dinner. I was only five, but, I was a woman and therefore I was to stay in the house like his personal slave. This girl, I think her name was Jasmin, to me was absolutely wonderful. We played with her dolls, her parents did not approve of Barbie and her stereotypes. In fact her father was the person who defined that word for me. I thought it meant something as innocent as having a newer stereo and an older one.

They even fed me most of the time, for when it was Visitation Time my father made sure to either not show up, or to use my body as he wished, then discard me like trash for the rest of the time. Jasmin didn’t mind that I was afraid of her father at first, she thought it was funny until he explained it was sad. These people were the most accepting people I had ever met. The only truely accepting people. Jasmin and I were playing in the stairwell one day when he woke up, dkscovered I had made pancakes that had gone cold and were slightly burned, and came out to punish me for being five and not being able to cook the food he liked.

I will not describe his physical assault, but I was not his only victim. This was the first time I ran from him. I ran to protect my friend, as he screamed racial slurs. You see Jasmin is black. I have no idea where she is now, that was the last time I saw her, due to my father’s violence against her family. I thought she was beautiful, and I wished my skin was dark. I am as pale as she was dark. She had the darkest skin I have ever seen, it was also luminescent, like looking at a person made of obsidian. She gave me my very first hug. That was how we met.

I was crying in the stairwell, and she and her father came home. She came up and just hugged me. Then we went to play. I do miss the innocence of youth. There was still innocence you see. There were stolen moments of absolute joy, before my father found out. When he attacked me and my friend, we escaped him. I knew I had to go back but I was willing to die for my friend. Her father wasn’t home, we were both alone but we dove through that apartment door, they were our neighbors, closed it, locked it and listened to him scream about how I was going to become a black woman.

Jasmin was also the first person to show concern over bruises. Despite my conditions I do not bruise easily, I never have. My father had also had enough other children to manage beating on us without bruising as much, and rarely where someone might see. He was calculating in his abuse, to make it harder for us to tell anyone. The worst abusers are the most talented at that. The last time I saw Jasmin, I was so afraid that my father would kill me. I even told her father that. I wish I had been smart enough to take his offer up. He offered to let me stay with him until my mother came.

We did try to call her, but, she was busy. My older siblings had refused to stay with Steve, my biological father’s first name, and I was alone except my friend. The police did come, yet they ignored the fact that even his daughter was telling them he’d tried to hurt her friend. This was a defining moment in my perceptions, when the police told Jasmin and her father, to send me back. They stated the Department of Child Services would be out to inspect his care of Jasmin, but surely my father was not really hurting me. They targeted them because of their color.

Often that is the day when I see my innocence starting to disappear. I had so little chance to be a child, but with great joy I remember every moment I had with Jasmin. I remember the utter innocence to be had, before I was taught to hate. It never took. Maybe it is living in New Mexico, where the Latin@ presence is so prevelant, maybe it is the fact that Jasmin and her father cared, or perhaps it is the effort I have put into bettering myself, rejecting the lessons of a false father.

The Cripocalypse is false. I know my disabilities are contagious via genetics. If I could have one last moment to look him in the eye again, I know what I would say. “Steve, I do not respect you. How can I respect someone so close minded as to abuse their children for existing? How can I want you to live, I really was hoping you would die sooner to better the world. You hurt me, and I know you will never care. You just feared being alone when you died, you feared it and none of your children will care when it happens. I am a cripple, who likes persons of color, who likes anyone she meets until they prove they are not worthy of it. You taught me horrible things, to steal, to lie, and to beat. I reject you en masse.”

He is not the only bigot who fears the Cripocalypse. So often people try to hide the disabled, the Persons of color, and yet, isn’t color the most important part of a painting? Art screams for diversity, and the privileged persons always claim to love it. I too wonder, how many more people who hate have died, or will die in a state they most fear?

Does Super cripple help forestall the Cripocalypse?

Z slashed through a shirt to reveal Superman or Supergirl's uniform

Z slashed through a shirt to reveal Superman or Supergirl's uniform

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