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.

She Wore a White Beret

Sprite adores the French Language. I think it is beautiful but my service cat understands French. I am not sure where she picked this up, but the first two years of her life are just hers and hers alone. Today, at Walmart, we met the most fascinating woman.

When I am old enough to be Elderly I want to be just like her. She has eight cats, speaks five languages, and respected the etiquette of Service Animal interactions, at least until Sprite forced her to pet her via a well placed headbutt. She still asked permission.

Being exhausted, a bit mentally foggy and heading into Walmart usually leads to calamity. Last time I felt this bad and did my shopping I was nearly assaulted for existing, because I get more bull headed in this mode. I am less forgiving, because it takes time to forgive, to ignore the slights, and to not let myself punch annoying people. I still manage, but I am ten times less likely to be patient and calmly explain why they cannot pet my cat, why they cannot touch me, and the fact that I am an intelligent human being.

A cart with a single bag of cat food blocked my path, and I said, “Excuse me.” She turned around, and I saw that this woman had the sweetest face. Her eyes were bright, gleaming with intelligence and years of experience, she held her back straight and smiled. Her smile grew as she saw Sprite. Moving her cart she commented to me, “What a lovely cat.”

I managed as always to not mumble, “I know. She lives with me.” Instead I smiled and said, “Thank you.” Then went to grab a few cans of cat food. She continued, “Is she a service animal?” I paused and said, “Yes.” She turned to another stranger and said, “See, you did hear a cat and i was right.” I felt a bit of guilt then, for I had been less welcoming, though I was trying to just do my shopping and go home. The man huffed, “Cats ain’t ever gonna be service animals.” His jarringly bad grammar made me wince and I said, “According to the law, any animal that can be trained and is not a threat to public safety, while meeting other specific requirements can be a service animal.”

He stalked away, a third stranger laughing, “Wow, Where can I read more.” My frustration was gone. I was shocked, first by the fact that this woman had stopped a stranger from complaining, stating the truth that my animal was likely a service cat, and that they should just leave well enough alone. Then by a request for information. I shared the sheet I have with me at all times explaining the law, and he wrote down a few of the website addresses I have in the first post, about how to Self Advocate.

I had already dealt with a manager who was also accepting of her. Entering the store, I had run into not one but two employees who chose to discriminate. Despite my state of mind and limited ability, everything was going well because I was being treated like a person.

We began to converse then, this beautiful woman and I. She said something I did not understand and Sprite perked, “Oh, forgive me I forgot to speak English.” I apologized for not knowing French, and she laughed. “That is a first. I am used to Americans, especially women, insisting I speak their language. I hear so often how horrible the French are, how we are rude, for expecting people in France to speak French.” I replied, “Well, we expect people to speak English here, and many discriminate on language alone in this country.” She chuckled again, her laugh is so smooth that it was like wrapping my ears in silk. “Very true. You are very open minded, you must not have gone to College.”

This confused me a moment and I blurted out, “Well, I dropped out when I broke my back.” She clucked her tongue, “You should make a better story out of that, you went adventuring and merely have gone to the college of Life.” We traded stories, then, she asked me how I trained my cat. I told her the truth, the same way I used to train my dogs. I rewarded her for good behavior, I punished her for the bad by not petting her and saying no. “She is very rare, her eyes are showing more intelligence than I have ever seen in such a small creature.” She paused then asked, “Do you have provisions for her, should you die?”

Refreshing, to be asked that. Most people run away from the conversation of death. As I wrote about before, I am supposedly going to die before September. I refuse of course, but Death is always looming over me, shadowing me on. “Yes, I have a series of plans, all numbered and written out incase one should fail.” She was relieved, her expressive body revealing that. “Good, so few think beyond their lives. You are rare too.” I shook my head, “No, I merely have lived.” I gave her my phone number, after we discussed a myriad of other things. I wanted to stay in that moment forever, but an alarm went off and I had to go. We will stay in contact.

She was so striking, not out of a physical beauty alone but also because of her genuine and open nature. She showed me an aspect of life I desire, and although my brain is still clouded over and my body demands rest it stood out, sparkling before me. She wore a white beret, a cream sweater, and tan pants. She glowed like a snowflake. Her blue eyes were a bit cloudy with age, but her mind was so sharp and she was open to sharing so much. I suddenly want to go to France.

She also took the time to converse with Sprite, treating her as an equal, and feeling joy as Sprite obviously understood her. They chattered at one another, and Sprite leaned up just before we left placing a kiss on her lips. After we parted ways Sprite made sure I did not feel neglected, though I felt the same warmth and love she seemed to. She rubbed all over me, purring and delighting in our shopping trip.

I even let myself have a treat, I bought a butterfly hair clip. No more lamenting my choice of a hair brush or nothing, I am going to have some panache, and a dose of style when I give my speech tomorrow.

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