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.

Burned at the Stake (Trigger Warning)

I was eight. My family had just moved from one small town in New Mexico, up to another. I want to name it, but, if I do it reveals too much about who I am. I keep my veil of safety. Being pale, with red hair and my own inhibitions in communication I was an outsider anywhere I went in this state. In small towns however, there is a generational acceptance and a strong xenophobia. That which is different isn’t just feared it is hated.

The children in this town were taught that red hair meant you were a witch. This lesson came along before I did. The further stigma of not being able to tan implied this further. I remember the attack, though it plays in half segments, like a badly edited movie and I feel like an outside viewer. I was on the swing, trying to kick the tree branch. Despite my fear of heights the Swing was as close to flying as I could get.

The other kids were calling me names again, chanting them at me, one threw a rock. The film skips. I must have fallen, my shoulder was out of place and my legs hurt. I was in a corner now, and I was quiet, I hadn’t learned to make them feel fear yet. They were new threats. The film skips. I hear the bible verses, half misquoted, none of them had actually read the bible they were just paraphrasing their parents.

“You’re weird.” Silence. “We should kill her.” Fear. “She’s a witch.” Confusion. “Thou Shalt’ not Supper a witch to live.” I did mock them back at that point, correcting their mistatement, “Suffer.” Fear. Suffering. I hurt. The teachers who watch and protect the students watched, they did not say a word.

I ran, I could feel the bones in my knees and ankles grinding, my hips hurt and crackled loudly. I could barely walk, a familiar feeling in daily life now. I cried too. No one wants to die. I thought if I died no one would protect my family. They laughed at my terror. I tugged on my teacher’s sleeve and begged, “They said they’ll kill me.”

“Go play.” The film skips. It’s the next recess. The sun is lower in the sky, and my body aches more. My shoulder is still out of place, but so is my elbow. The rope cuts into my skin. My lip is cut, my glasses are broken so their faces are just blurs. “Witch. Witch.” I feel the sticks under my feet, one of the boy scouts is rubbing sticks together to try and start a fire. I am being burned at the stake.

I did not cry then. I thought I was going to die. I closed my eyes, and I did nothing. I did not pray, I did not let myself feel. I just felt things. Mostly, I felt relief. I thought then I would never have to see my father again, or the older boy who had already found a new victim. I thought if I died my mother would be happy again. I thought the world would be a better place.

A sharp pain comes, and I start to cry. It’s not fire. They failed with fire and one of them threw a rock. The film skips. I cried, I knew I was bleeding and I knew too my guardians did not protect me. I had no teachers who cared, I gave up then. I gave up living in my heart. I had already been broken, I had already been beaten. This was just proof that the world was a place of pain and violence.

Proof no one could love a piece of trash like me.

Invalidation of a person. “She’s weird.” I did not scream, and I did not shout. I just waited to die. Why was it taking so long? Why couldn’t it end? Why did no one do a thing to stop them? Was I so very bad that I didn’t get to die? Was I so very bad that I was going to die?

The bell rang, and everyone else went to class. My teacher’s voice came as a snarl, “You will be counted as absent for the day.” She always looked away when the other children hit me, cornered me, and this time she had just watched. She looked away too when she caught one of the teachers raping another girl. This was the same. It all felt the same to me. No tragedy worse than the others, every breath was tragic and full of pain.

The third recess came, I hurt from the sun. “Whore.” I did not respond, I did not look up, I just stayed silent. “Slut.” More rocks came. One of them found a lighter, maybe a teacher gave it to them. The film skips, plays backwards, the insults the same, a chant of hate. The film skips forward. They have a stick that is burning. My ankles are covered with debris, rocks and sticks, a branch pulled from a tree. Dry tinder, dry grass. The lighter is set to the flames.

I wasn’t afraid anymore, I just watched the sticks burn, listening as they cheered. They were killing me, but, they were happy. I wondered if my mother would be angry at me for dying, or if she would be happy that there was one less mouth to feed. I could hear my father’s threats, I could feel his hands on me. Everyone said I was evil, so dying was right. One less bad person to ruin the world.

My feet hurt, but, I just stood there, tied to the tether ball pole. The principle suddenly was there, the film must have skipped again, but, I didn’t care. I just wanted to make them like me, so I would have to die. Then, maybe my mother could love me. I didn’t know she already did. I thought I was bad. I thought that every lie said was truth. I never heard the good, I don’t think it was said.

I heard yelling, I thought it was more hate. “How dare you just watch?” A knife was drawn, I thought the principle was going to kill me. I had been out in the sun all day, I hurt too much to think. The film skipped, he was carrying me inside. The teachers went back to work, watching. “Who did this?”

Silence.

Eventually I told him, all I could remember. I told him, and he cried. I thought that meant he knew I was evil. He called my mother, I don’t know if she answered but she did not come for me. My teacher kept her job, no one was punished. Only my body, my mind. He drove me home, he said he’d do something. I am sure he tried.

When I went back to school the next day, we started to read about the Salem Witch Trials. Everyone laughed about setting me on fire, about burning me. No one asked if I had blisters on my feet, if it hurt me to walk, or commented on the fact that I had blisters on my face. It was funny. The film skips.

It was all my fault, my mother said, if I just tried harder to get along. If I was nicer. The film skips. Years this time. In and out of the institutes I had already been, I was tired of it. Someone called me a witch, I fought back. I did not want to burn again.

The scars are hidden by other scars. No one was punished. No one cared enough. I was just a little girl, I wasn’t like them. I never will be. Over the years, I watched them as an outsider. I watched them live, I watched some of them die. None of illness, it was always stupid and preventable. I watched them age, I listened to their cruel words.

Every year, they reminded me about it, about the time they burned the witch. I still don’t know why it is funny. I was always threatened with a repeat performance, whenever I did not give them their way. My mother asked why I never had friends. Because I was the Witch. I took their mantle, I practiced the craft of hatred. I made them fear me.

I committed acts of violence, and I learned to hate. I never forgot that my siblings watched too, I never forgot that the teachers watched. There was real danger, there was no medical treatment for it. I had to walk to school until my feet healed, with burns. I had to feel the pain. I still feel some of it.

My sister found a half acceptance by selling her body for it. She let the boys do as they would with her. She let herself be their perpetual victim. It helped that she was born to be blonde, blondes cannot be witches you see. Their culture too taught them that the blonde women are the most desirable. My brother never found acceptance, he ran off as soon as he could, starting adult life far too early. Facing different pains than I.

My siblings who were born while we lived there still never quite fit. Generational Acceptance. Their great grandchildren just might fit in. I hope if they do, the town changes from violence and hate to love and acceptance. I never forgot who watched. I can still list the names. I know too, if my principal had not been sick, his age catching up with him and his body failing him slowly, they would not have just watched. He was a good man. One voice trying to teach them to love.

I never just watch. I will open my mouth at risk to my person, if it feels right. I will lift a hand to help someone if I can, or I will find a way to act. I never just watch. A part of me is forever burning, forever marred, and forever marked. I hear often that bullying is harmless. It isn’t. That was written off as bullying. I spent the rest of my educational career in terror for my life. It’s never just bullying. it is sheer and abject cruelty.

Is it just bullying to throw rocks at a person hoping to kill them? Is it just bullying to set someone on fire? Is it just bullying to blind them? Is it just bullying or is that the excuse given to make it alright to watch? What are you watching happen? What do you let someone do, that costs another?

Every word, every fist, every rock and the fire all took from me. Every adult who just watched is more guilty than the children, because the children did not know better. They only knew what they were taught. They were taught to persecute outsiders, to shun those who were different and to fear any slight varient. They were taught that god hates difference. They were taught hatred.

Not many people in that town grow up and function well outside of it. Part of it is the high density of criminals, hiding easily from the law. Part of it comes from the number of illegal immigrants. The lack of proper education, in a state that always falls in the bottom categories, this is the town that scores the lowest every time. The deficits that these children face disable them further than anything ever has me.

They burned me at the stake. I am struggling to forgive, but, when one of them ventures out of their town or when I must enter it’s borders I still feel sick and fearful.

They burned me at the stake. No amount of explanation or justification will ever make that alright. I may forgive them but I will never forget. I will not pity them, I will also not abandon them. If I am given the choice between watching or acting, I will act. I have to, I must rise above the actions of abuse, incest, torture, and pain. I must rise above. I must heal. I give myself this edict.

They burned me at the stake. There was no justice, there was no help, there was no relief, there was no escape. I had to face them. I had no safe place. I had no one to trust. I wasn’t just lonely, I was in a desolate place, beyond the reach of the rest of the world, wrapped in torture. Reality was worse than any horror story I could read. It was all just a nightmare, except that my nightmares ended eventually. I was beyond suicidal, I was beyond help, because no one offered help. I was blamed. I was a victim. I was nothing like who and what I am today.

They burned me at the stake. There is no forgiveness yet, but, I am trying. Each word written here is one word closer to forgiveness. I have forgiven myself for not being stronger, for being afraid, and for being a child. I have not forgiven them for their cruelty. I have not forgiven them for demanding kindness when they felt pain, for denying me my right to be a person. I am trying. If I can forgive them, then perhaps someday I can forgive my biological father.

I might never forgive them.

They burned me at the stake.

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