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.

Agent Double Oh Carrot and M

The internet is great for anonymity. I have several user names out there, including the play on the word Anonymous: Anon the Mouse. Over the years I have picked up friends online. Some people scoff at the notion of friends you have never met in person. I used to think it was silly but I have truly bonded with some of these people. I am also aware of their humanity, the text based nature of the internet can dehumanize, leading to bullying. It can also lead to the shy person, or the person with a speaking related disability, or even muteness communicate with equality.

I have a friend, who we will call M. M gave me permission to write about him. Every day we have conversations that are full of little things from his parents all the way to mine. We talk about everything. M also has helped me stave off starvation, homelessness, and has yet to pester me about the money I owe him. He is one of the people I consider great. Great men do not always lead countries. The last eight years taught most Americans that.

M is an Immigrant. He lives over in LA, and is of Indian descent. His parents left India, went to Canada, and he came here. A very lengthy journey. M is shy, he at times questions why he feels things at all. Some of this is a reflection of the stigmatization by the psychiatry industry to feeling at all. Feelings have been medicalized, diagnosed and it gets harder every year to find anyone who doesn’t qualify based on religion, personal food preference, or how often they sneeze as a headcase. (The term headcase is being used here for shock value, and also to illustrate my lack of belief in the psychiatric system.)

Despite my experiences with therapy and torments, I still see some value in even the conversational aspect, though I am anti medication. Few people actually need antidepressants. Most can make enough progress to no longer need the medicine. M and I discuss these sorts of things. For the last few years, which feel to me like a pleasurable eternity, M has been fighting some painful issues.

Everyone has issues. Everyone needs help sometimes. M is very insecure. Every day he has to fight a malignant thought process, he constantly devalues himself, and he relies on outside influence to determine his self worth. I am not the best friend to have if you are dealing with those issues. I can be rather harsh about things when I disagree, even when I do not mean to be.

His parents raised him with Traditional Indian Values. Often, when he comes to me needing help coping I offer the exploration of why this is a problem. Does this solve the problem? Not always. M sometimes cannot handle the discussions and will tell me so. In our five or six year long friendship we’ve rarely fought, even when we disagree. Our conversations started over something utterly anti feminist, objectification of the body.

That objectification was mutual, and did not last long as we discovered the intellect and wonder that is personality. The internet is great for that, if you use full words. Netspeak annoys me, and M doesn’t use it. If he does, he hasn’t with me. I love him for that.

He recently began therapy, partly because of our conversations. We discussed heavy topics, and after a time I no longer felt it was my business to help him. He needed more than I could offer. He has a great therapist and has begun to grow faster than ever. I watch him change, even if it is merely reflected in our conversations.

Year 1: Conversations centered aruond the superficial, and mutual interests.

Year 2.: The first loan of money to save me from starvation came, still owed to this date. The exploration of psyche began. I turned to him when I learned about my broken back, and he helped me to cope. He helped me to accept the permanence of my disability and never once shamed me. A first. He began to reveal his insecurity with women, his fear of failure, and his pain.

Year 3: We had our first argument. I think it was about Wonder Woman. It was silly. I started to become aware of feminism. M coddled me when I would cry about discrimination, he encouraged me to not give up, and when Sprite nearly died from anaphalactic shock due to her poultry allergy, he did his best to help me pay for her medical bills.

Year 4: I began to write again. We exchanged periods of fearful whimpering, expressing our doubts, fears of judgment, and he revealed an inexperience I had not expected. His issues were effecting his ability to thrive. His past and lack of education on how to cope, his experience as a person of color, and his constant stigmatization based on his body were revealed more fully than even I have managed here, as he tried to figure out how to live. He was being disabled by the confusing messages of the White Patriarch and the painful messages his parents gave that also came from the WP.

Year 5. He began therapy after finding a great doctor. This has encouraged me to try and find a therapist I can trust. (Still looking) Our conversations over the previous year and year 5 evolved rapidly from simple coping skill discussions on to political issues such as Obama’s election, feminist theory, self respect and the influence of where you live on your mind. I discovered Ms Wheelchair USA’s program, and was again encouraged by my friend to enter the competition.

Year 6: We are now in year six, and still we grow. Each day holds new pearls of wisdom, he shapes my future as I shape his just by knowing. He reminds me to try and enjoy the little things, and, often manages to cheer me up even in my bleakest moods. Our future is certain in one way, we are life long friends.

M and I discussed this morning the mistake Obama made, for I discovered it shortly after M’s very own version. We discussed how much ablism runs amok in our world, how it seems so acceptable. Everything can be lame, and if you are offended you are a “tard”.

We discussed the influence of self hatred in his family. Self hatred is something taught in many cultures, especially once the people are conquered. India and their hatred of their own natural colors made me aware of this. I remember sitting in the library, I was very small, and reading about Bollywood. It was newer then, and one actress was being touted for her pale flesh. Confused, I wanted to understand why her being white was more important than her ability to act.

M is Indian. So often our conversations are about body acceptance. He has what I see as an average Indian frame. He is also shaped like my Person. They are both moderately tall, IE average. Both have a good deal of body hair. I find that delicious. Hair should be everywhere. Both have large pectoral muscles. Often the chest of a man, if not flat or followed by a six pack is demeaned, “Oh my gawd he has MAN BOOBS.”

M today related to me tales of being groped because of his chest. He hates himself because the otherness was slammed into his mind again and again. He was assaulted by others in his life, still as an adult this happens, all because his body shape is not flat.

It is times like this, when revelations hit, that I wonder if the media expects us to all become paper dolls, two dimensional cut outs with no personality and the ability to be mass produced. M is my best friend.

Without M, I would never have met my Person. I needed someone like M to come along, to teach me how to trust men. That first year now seems overly long, with conversations that were kept shallow. I was learning to trust. I had never really had the option of trusting someone before M. Everyone else was in my life by the whim of another.

M came along just when I needed him most. I had just broken my back and I was still homeless. He didn’t know that until today,when I asked if I could write this. I am crying when I write again, because I just visualized my world without him.

I would be with the abusive people, trapped alone in my room. I would have no internet, no hope, no Sprite, no wheelchair. I do not think I would be alive. Knowing M opened my life up. He never once did anything to hurt me. When I was afraid, I could turn to him.

I remember the first time I came crying to him. I felt as if I was going to explode. I couldn’t breathe. I was crying and couldn’t stop screaming. I was no longer homeless, but had yet to receive my diagnosis. This was the conversation where I realized he was a friend. I wanted comfort. I wanted someone to trust. I didn’t tell a soul how much I hurt, ever. I told M.

I expected him to tell me how worthless I was for hurting. I expected him to tell me to suck it up. I expected him to tell me how stupid I was for being in pain. Instead he told me this, “It’s okay. You have me and I will be right here. Just cry, do what you have to.” I remember word for word because I held those words in my head and heart for days, I chanted them when each step made me want to puke, I whispered them when I wanted to cry but someone was around. When I cried, those words sometimes made it alright.

I will write about M more often, usually with a tigher focus but first I had to introduce you to him. He is often insecure, he fears being alone, but he never will be. He has me. I love him. He is closer to me than my siblings, he is trusted just as much as my friends who are offline, in some cases more. Without him I would have never let myself date, I never would have found the courage to go back to that first store that discriminated and put them in their place legally. I never felt alone, I knew if I had to vent, cry, or needed a safe space to mourn. I had M.

Every time he comes to me with a bit of pain, I cry for him. Not always literally but I mourn the fact that he hurts. When he forgets to love himself, I do my best to hold up an accurate mirror. M works in the movie industry, he works for a graphics company and they make some of the best modern films happen. He has worked on Batman Movies, he has worked on the Golden Compass. He has dibs on future Academy Awards. M even has movie credits. He fascinates me, he is very unique and I always wish he were here in person.

Even on my bad pain days. M and my Person are the only two in the world I would let see me cry. I hope you find an M. If you have someone like M, then, treasure them. Everyone should be as intelligent, beautiful, and charming as he is. Everyone should be as caring. Everyone should be as willing to learn.

If more people were like M, and many really are a good deal like him, the world would have more equality, more love, and likely no Isms.

Now, just to explain the Agent Double Oh Carrot moniker, that is mine. I play games and one of my online identities is Agent Double Oh Carrot, a rabbit themed super spy. This video is of a 3D program called IMVU (The link is not a referral link, so if you join I get 0 credit. If you are a member feel free to drop me a line, my user name is Anon the Mouse).

I am in the villain’s base, with some of the rabbit themed villains and we are doing the Caramel Dansen. In this game the Villains are turning out to be the good guys.For a HQ variation with some of the same characters, you can check out the video responses.

Thank You is Sometimes All You Can Say.

This feels strange, to write. I am going to go for a crown. It took me a very long time to become aware of my own value, and through the Ms Wheelchair USA program, I can not only show my own skills and confidence but I get to hopefully inspire other women and men to be confidence. I have conversations daily with my friends, sometimes strangers, and every so often in the mirror with myself when my pain has me grasping for strength I am sure I will not find about confidence and value.

I minister aid to those in need. Today I recieved two gifts. One, is the first donation for my campaign towards the Crown, and the other was a bottle of holywater. I will not discuss my religion here, as I do not think that has bearing on who I am or what I am capable of doing, but I see this as a beautiful thing.

The woman who sent me the holy water is one of my strangers. It was just before Christmas and I went with a friend to the bookstore. Meandering we agreed to meet at the coffee shop and I went rolling through the shop. She looked happy, except her eyes. I remember how utterly void of joy they were, and she couldn’t seem to stop staring, so, I struck up a conversation with her about the books on the table. She didn’t take long to open up to me. I remember my utter shock at her telling me she was going to commit suicide. I responded before I thought with, “Why would you want to do a thing like that?” After an h our of conversation we hugged. I rarely hug people because it pains me, but, she needed a hug more than anything else. She told me she wanted to send me a package and after meeting me she couldn’t kill¬† herself. Our conversation touched on the spiritual, but mostly her need to be someone. She had forgotten herself for years to be a mother to a disabled child, and now her own grand child was disabled and she couldn’t fathom happiness for anyone. Today I recieved a thank you card, and the bottle from a local blessed spring. It reminded me of my power to inspire people. I did not need a reminder to know I am good, but, the reminder that I can touch people by being who I am was a surprise.

I then talked with a male friend of mine who often forgets to love himself. For years he has battled this and tonight I shared with him how I learned to love myself. I started telling myself three times a day in the mirror I love you. That was all I saw myself, when washing my hands. Then, I wrote on my stomach, legs and anywhere that was invisible to others, I love me. I love me. Over and over. It took a long time, then I started to believe it. Mike and I met over something daring, I did something that I might be ashamed of now, online as many others do. The evidence is thankfully washed away by server errors and time. I had made myself do something out of character, to see what would happen. I never went back in my shell. I instead became a real girl. No more hiding, no more sorrow. Shortly after this I broke my back, and had to resume chanting how much I love me. I still do some days, to help myself along when the pain burns me through and I forget that I am more than a disabled chick who can barely walk. When homeless Mike fed me, he even helped pay for Sprite the Service Cat’s vet bills. He is amazing, and, I hope that he remembers that. He reminds me of who I used to be, and even admits when he is wrong. A very rare individual whom I appreciate. He is who I turn to when even my well worn tactics fail, he can always make me smile and is the Brother of My Soul. He is greatness himself, and proved to me, before any other male could, that not all men are evil. Without him, I would still be fighting daily to not feel afraid in this world. Instead I feel love and warmth even in my darkest hours.

Then, I went into my favorite IRC, dedicated to graphic programers who make animal skins for IMVU, a 3D Instant messenger and started talking with a brilliant young woman. Her name, posted with Permission, is Weesha. We talk often, though the last few months before I started this blog that contact was rare due to no internet connection. I told her of my discovery, just before the deadline and without enough time, this year, to dedicate to my new goal of Ms Wheelchair USA. We brainstormed for ways that she can help me to spread the word about MWUSA, to reach my goal, and so that people can learn about my Platform. I haven’t finished fine tuning the platform yet, but tonight she spread the word far enough that the first donation was made by Jen, a person of similar interests, taste, and a person who deserves a very special thank you. My wonderful day started off in tears and has blossomed into a garden of delights.

I just want to say thank you, these people are beyond special. May any who read these words have as dear friends and family as I have. They feed my soul, they nourish my dreams, and wish for the dreams of all to come true. They deserve as much as they give. Each one has their hopes and dreams and this, dear readers, is my hope for them.

For Information on Ms Wheelchair USA please visit their website. There you can learn about the current Crown holder Beryl Holzbach.  I saw some of her youtube videos today and was brought to tears, mourning what is, and hoping that her advocacy brings great strides to the medical field.

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