Stranded (Also International Women’s Day)

Today I was stranded. I knew it would happen eventually, when the expensive repairs I still had to pay for did nothing with my chair’s working. I absolutely knew someday I would be stranded in my chair. I had plans in place in case this happened and every single one fell through. It was frightening. I was alone in this swirling mass of people. I knew I shouldn’t go out too but I felt pulled and it was WONDERFUL, up until my wheelchair stopped moving permanently… in a street with cars moving zip zip zip. I grabbed a man’s arm, and asked him to help me, explaining the chair was dead. He asked if I had a way home after we worked as a team to get me out of the street. His daughter called him Superman. He really was to me. I am still having images of pancakes shaped like me dancing in my head.

I was left with no recourse but to call my Mother. Mom maybe, today she was a mom. I saw that she is changing. Just as I am returning to who I am at my best. This day was full of sparks of potential. It all started when I woke up with energy for the first time in what feels like my entire life. I wanted to go out but it was too cold, so I fiddled online. I almost wrote something about that tug to go do, then checked the temperature. Twenty degrees warmer and I was out the door. There were no hesitancies in the chair like usually come before a death, it was smooth. It was beautiful. I went to the fleamarket, which is close enough that I only have to cross the street a few times, at least a major street where cars actually are an issue. This street is big, and I always scream my way across “I am going to die I am going to die I am going to die oh gods oh gods I am going to die please don’t let me get smushed” on repeat until I hit the other side of the street and merge into the slower traffic that leads into the flea market. pedestrians and cars comingle there. This is not the fleamarket that is at our fair grounds but is a smaller one, which means it is less diverse but still fun.

I just met with a new friend, who has an interesting past and felt connected to me because I looked him in the chin (fake eye contact is a go) and treated him like a person, being that he is one. He is from Jordan, and we met when he was struggling with acceptance in this country. He sells jewelry and I have been saving for this pair of earrings he made. I can wear them with my headset on even, they are the most comfortable pair of earrings I have ever had. They are solid silver with a silver cat’s eye. He charged me the cost of making them, and held them for me for a month. All I had to do was treat him like a person consistently. I promised him I would come to the fleamarket whenever I could and would say hello. It was there at his booth that I heard two people talking about a convention in a small building not far from where we were. The entire building was full of women celebrating International Women’s Day. I couldn’t believe it. I could go! Enroute to the proper exit that would spit me out right across another street to this event I even found another booth. There I bought $500 worth of Star Trek Geek Paraphenelia for $4. That’s right. The deal of the century.

I always get good deals at the fleamarket. I look for quality, I bring a limited amount of money, and I only haggle on items that I know are worth it. I also tend to know what I am looking at. There is an antique set of glasses that I want to get but thirty dollars is a lot despite their actual value. I am saving and hoping no one else sees them for what they are. Then, I ran into a friend who moved away years ago. Her son is actually double his size, and the DVD I never returned to her? I still have it. It was amazing. I felt almost high from the warm sun (not on my skin but the AIR was warm enough I didn’t need my coat for most of my day)

I made it to the celebration. I actually attended and performed at the first celebration Albuquerque had on this day. I stood up and read a poem. I remember trying to focus on not fainting, I remember though how good it felt to be a woman. To celebrate that. The celebration has grown. The building was actually a warehouse that is the size of an entire city block, and once inside I had to pay an entry fee (the exact amount of money I had left). The women at the door asked if i was allergic to the stamp AND the ink. The stamp was a silicon base and the ink is natural dyes which for me is a better shot than chemical. I wasn’t required to get stamped but I went for it. I will wear this turtley shape for about a week. It may be a sea monster? I am not sure. I started to explore. I talked, I advocated, there was plenty of advocating to do.

I spoke with women at a Domestic Violence Awareness Booth, and helped a young woman decide to get some counceling and potentially leave her abusive boyfriend. It was accidental. It was unplanned. She felt safer talking to me than the actual people at the counter. They supported this, and I let her talk. I am possibly going to give a speech at some of the local high schools now. The key that lead to this was my obvious first hand experience and the fact that I am recovering. I admitted to her it takes a long time.

From there I went around to another booth, I was given some pretty roses, which I have one of on display. The other I sent with my mom, she loves flowers and she did rescue me. Besides, the roses were planted a year ago in honor of Women, and she IS a woman! There were a lot of booths. I am going to work with a breast cancer group and we are going to create a FREE seminar for women with disabilities, the seminar topic? How to adapt to the self exam. I also was given a great history lesson by the Census worker. She thought it was interesting I wanted to know the history as no one seems to ask that. Women did not used to be counted in the census, and in my state this is the first year SINGLE women (divorced, single moms etc) will be tallied. Last year the census estimates we were shorted by over 1 million people because of this “oversight”. I wish I could work with them more, but, no matter where you live get counted in the census. If you are low income, this will effect funding for local programs like foodstamps or even your transport system. This is a big deal.

Most of what went on swirled around me. I had brought my MP3 player, as sometimes crossing the street panics me and I need the music to calm down. So I used it as needed. I left Sprite at home, as I was only going for a few hours right? Right? (I was so wrong) I wanted to bring her but she wasn’t feeling as good as I was this morning. She’s fine now, and is clinging to me.

Advocacy I had abandoned was revived today. I did not abandon it because my passion was gone but because I could not advocate. The orphan goal did mature on it’s own. Accessible Mammography. When I needed a mammogram a year ago (I am due for another one this year oh “joy”.) I had to first fight for one based on age, then I had to find one where I would not be forced to stand, as you must stay still. It was unpleasant and at that point there was only ONE accessible mammogram machine. Now one of the hospitals I called has several mammography machines and… they went further. My concern was small as I had to start small to be heard. They have an MRI machine now, that is larger for the larger bodied person, and is a sitting/standing MRI! If you cannot lie flat, you can NOW get an MRI in my state without being in the very long list at the VA.

There’s more. There is a van, with a portable ACCESSIBLE mammography set up that will go to the low income neighborhoods and give FREE mammograms. That’s right. Free mammograms to the poor who cannot go to a doctor. I am sure that this was a long term goal to a degree for them but, this was what I was advocating for when things went badly and my life was ground to dust. Access for all. My heart is singing. Even the BMI and weight loss booths couldn’t bring me down.

I did something a bit horrible to the BMI guys. They were men, first of all. Second of all they were telling people they are fat with the BMI, which is not scientifically proven. It ignores things like breasts, bone density, hip and buttock size. It ignores genetics. It ignores a lot. they also were trying to get people to stand and walk in this really awkward way then telling them they needed the gym. I found out about this because they made someone cry. She’s very thin, and they called her fat. I went over and started laying out scientific facts, I blocked their booth with fact. People could come and go but I spread the word and listed my sources. Some still went but, before I left people were talking. Big impact there? Teenagers were excited by the idea that they don’t need to lose weight. I heard someone say “So, I am really okay the way I am. No one ever said anything like that to me before.”

Today I played pebble in the pond. it was beautiful. There were more moments. Every single moment was something impactful. I admit I avoided the rape crisis center booth. They were exuding sorrow. The women running the booth looked depressed, and sad. This was something I couldn’t face. I don’t feel the same stabbing pain in my chest when I say rape most of the time, but, they were breathing it. No one stopped there. I did a drive by snatch and grab of a business card but I couldn’t talk to them. Penetrating sorrow is just not my thing.

There was one other thing, I found something for me. There is a program for the disabled in my city, to socialize us. To get us out there. They provide transport, safe food if you want, activities, and the thing that they do is… they offer this to people with mental health issues, physical disabilities, developmental delays, and more. This company, as they do take insurance but do not discriminate on the cost of poorness itself (IE it’s free if you can’t pay) they saw the need for more than just children to have access to programs. There is a special program for Autism AND one for the depressed. The woman said often these groups overlap, and the company does not see Autism as a disability, but a different type of mind where at times things may be disabling. I am calling on Monday to find out what services I can get. this includes therapy. Therapy. At long last, the help I need for my depression GEARED for the person who has physical challenge and pain. Therapy… amazing, like fresh water from the earth, the idea flows over me, it refreshes me.

Normally this much would exhaust me, I was a bit sore but had enough energy. I checked my battery. It read a full charge. Actually it still reads a mostly full charge right now, so we know it’s not the battery that left me stranded… I heard it, as I was about to leave. This music from my past. The dancing twitch hit me, and I followed it. I got to stand (well sit) with the dancers, as this was the access area. I was far from the only person in a chair as well. It was beautiful. There were Irish Step Dancers. I left before the belly dancers went on. It was a bittersweet expierience. These women, 3 years old to 53 were dancing. I could feel the music. I rememebered every step. They were flawless. Even the one who fell (the stage moved, it wasn’t her fault) got up and fell right back into step. She was far from adult but had the perfection of skill of the adults. Even the three year old was moving as if born to it. Likely she was. The pain was from my memories so I tried my best to shut them out. I got to thank the dancers, and that was when I left.

After things like suggesting planned parenthood give out latex free condoms (just an idea, and they did ask) on through finding out my victories, I was satiated in ways I have not felt in what has been a year, but a year that encompassed a life time. I left, the music swirling in me. I went back through the fleamarket and just as it was safe to enter the street I zipped out then… WHAM… a hard stop. My chair was completely dead. The light was changing color, as I would have been across. A man was about to cross and I grabbed his arm. I hate that, but I was desperate. “I need your help.” He looked startled. This man wasn’t exactly approachable. Given the type of people who frequent this market, I would call social cast offs, non typical, and sometimes scary (but only in cliche ways, not actually dangerous). I think as he looked at me he was just stunned. No one asks for help here. It was help or die.

I told him how to put my chair into freewheelmode, an idea that he said was the best invention ever. He offered to push me home. It was too dangerous, and too far. I considered it. He made sure I was safe and I put into action my plans. Plural plans. No one was home, no one answered, and one is highly contagious. I called my Mom. I explained what was going on and we brain stormed. We found a way and she drove the two hours to get me home, then raced back to get my stepdad to one of his mandatory do this or go to jail things.

The man I stopped for help was so wonderful and kind. I love my neighborhood because I feel safe here. On the outside it looks like a horrid place with violence and gangs but, appearances lie. It is like a small town in the big city. The man’s wife and kids were going to wait for the next light, he was showing his daughter how to cross the street. I did not know this as my chant had begun. His daughter said the most amazing thing. “Daddy, that was just like superman!” It was too. He saved my life. Cars were coming, it took a moment of choice, and he chose what i would say is the right thing without batting an eye.

I rested and ate, and Sprite yelled at me for a while for being out so long. She was really loud, so it was definately yelling. She then forgave me and won’t leave my side. I cannot go out until I get my new chair, but, man waas it worth it.

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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