Loud Silence and other Oxymorons!

I am having a pain day, yet emotionally I feel fairly good. I am watching my cat’s bathe, and just found a friend’s keys. That means they have to come back. I already called them too, because of course they must be hunting for them. It makes the writing jarring at times as I like the flow on the dance of the words. I have been so busy lately, finding the means to all the scattered ends that make up a life, that I finally am having a moment of peace and solitude. It sure is noisy in my head today.

I am amused by some random things, curse words, the way that the pillows on my bed look, the sound of my neighbor’s existence being so quiet here after a year of so much noise. There is a quiet in this apartment that I have longed for and it dwarfs everything. At this moment as the sun streams through the window brightening my home, the cats too are between their moments of gleeful play. Here they play, not just a little but a lot. They wake me at times, crashing and thudding, yowling and howling, and being free. Sometimes they wake me up just so I will roll over and wrap my arms around them both using them as pillows. Even with music my house feels quiet.

The quiet won’t shatter here, though I find the adventures of life are leading me to some odd discoveries. I am going through the process of getting reassessed for more caregiver hours, I am exploring Second Life at long last, and I find that second life is actually satisfying. To me the virtual world has never really satiated the needs for communication I have, but to see the other person’s online self has given me something I was lacking. It is not a perfect match for social interaction but, it does fill in part of the void.

The Oxymorons however, abound with Second Life. There is less chat speak present than I expected, and more dysmorphia of the body. You can see people who have made their avatars look anorexic, no one that I have met so far appears to weigh as much as they really do. I am not even human in this virtual world. I donned the form of a cat, so that I can run and jump and play. It cuts down on my jealousy with Sprite and William. Some of the males suffer from a body image issue as well. They are so bulky that it is frightening to behold, their bodies twisted into caricatures of humanoid.

I know if I spent more time out of the house I would see the same body image issues, and I know too the media perpetuates a large portion of this mental disease. Our culture is ill. The more we watch movies with actresses who happen to make a broomstick look like it is obese, the more we make these movies, the more pressure our minds are under. Children suffer most especially. When I was diagnosed with Bulimia at the age of eight, it was rare and almost unheard of for someone so young to have an eating disorder. Now? Eating disorders are common at any age.

I didn’t notice until two years ago how men are also effected by the movies. They too have the unattainable body type. The people who twist themselves into these forms, perfectly thin, without figure, without health in many cases, give up their free time, the ability to go out and do things with friends, and those who use starvation or an extreme diet put their mental health at risk. Dieting can kill. You hear about it with diet pills but the restrictions and extremes that are persistent and present right now are the most shocking, cutting your stomach apart so that you can’t fit as much into your body is not going to work if you do not pay attention to how much you eat.

Now I am not saying everyone who diets doesn’t need to. Some people have eating disorders or disordered eating that effects their health. Exercise and proper diet are what matters. Proper diet doesn’t mean a spoonful of tomato soup a day. It means three squares. It means the balance you can achieve with a mixture of foods that are safe for you to eat. It means too listening to your doctor even if it means giving up food you may like.

I noticed too, by no longer watching television I no longer feel as worried about my weight. I rarely did before, but at times the old messages about my value and my body came up. The recent activities that I have dealt with made that much harder. Improper diet can trigger improper behaviors. It is harder to reign in my anger, which can be at times misplaced. I can be harder, but, when I look in the mirror I see me the way I am. I feel more beautiful today than I did when I was belly dancing. I think I may be healthier. That last sentence could be another oxymoron, or merely disguised as one.

The world we live in prizes ability, appearance, and supposed beauty over health, happiness, and the ability to live. To fit into this world in the way that they wanted I was living in a private hell, I was so tired, I was also living in pain that would never be treated because of course the pain had to be in my head. Our society is sick.

I challenge my readers today to leave the TV off for one week. You can get your news online, but at the very least try going one week without a sitcom, action or adventure. Spend some time with your books, family, or in the roaring silence of peace. Document the ways that you feel before and after, and see if there is a difference between your perceptions. How toxic can our current media system be?

Some other questions you might ask yourself?

1. How often do I see people like me (ability, race, gender, sexuality etc) represented on the news? In TV shows? Broadcast network shows? Cable shows?

2. How often do I see people like me represented as broad stereotypes (the angry guy in the wheelchair, the ugly woman in the wheelchair, the lesbian for a week, etc)?

3. How often do I see people like me represented as the villain?

4. How often do I see people like me represented as the victim?

5. How often do I see people like me as the hero?

6. How often do I see a person of a moderately healthy weight or a person who is plus sized ?

7. How often do I see a plus sized person as the lead, hero, villain etc?

There are dozens of other questions you can ask, but, the most important:

How does the lack/plethora of people like me in the media make me feel and effect the perceptions I have of myself/others?

I look forward to reading a few responses, and I think I may go and read a book.

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.