Understanding the reality of a "carry letter" finally.

I have friends and family who are Trans, people I love, treasure and respect. In the Trans community there is the concept of a carry letter.  It's always been kind of alien to me because I lacked perspective. The concept is simple, because of the way Trans people are treated, especially when they are working to follow the rules of gatekeepers that decide if and when they can attain necessary surgery, they must have a carry letter for their own protection.

Protection from whom you might ask?  Chief among those they need protection from are often the very people who are supposed to protect them. This is sadly not uncommon, in fact unless you are a wealthy, white, male in this day and age, we all need to fear these very people whose job it is to protect us.  Trans people, mostly women, who still have ID with their old name and gender often must have a letter from a doctor verifying they are being seen, and that they are required to live in the "target" gender for a period of time before they can be "permitted" to take further steps.  Police officers sadly, can often pull someone over for a minor traffic infraction and wind up blowing things all out of proportion and causing harm to people because of bias.  Thus a letter from a doctor saying they are fine, under a doctor's care, and this is a requirement for the process of transitioning gender. Logically I have always comprehended this, but never fully understood what it meant or how it feels.

Frankly, Trans people fare just about as well in terms of interactions with authorities as any other minority, with the possible exception of so called "racial" minorities. People Of Color (POC) and Women Of Color (WOC) are ruthlessly slaughtered simply for not being white and or male. Add in transition status, disability status, gender status (TransWOC) and things get even harder which is why #blacklivesmatter is such an important movement in the US today.  Similarly #translivesmatter has become a hash tag because of the way they are treated.  So, Trans people, mostly transwomen, have to have a "carry letter" affirming their right to exist.  It's wrong they are treated this way, and it shows just how sick our country is and has been for some time. And lest we not forget and central to this post, disabled people are also singled out and mistreated for being ourselves. This can be worse when people in official capacities become involved. So #disabledlivesmatter is a real thing too.

Until recently, a carry letter has been something I knew of because people I love are forced to carry them. Otherwise, I had no real personal connection to the concept other than I very much wanted and needed people I love to be safe.

My life, long before being officially diagnosed as autistic and a survivor of trauma, has been punctuated by communications and understanding problems, especially with people in positions of authority. I live with multiple, overlapping disabilities and medical conditions that have contributed to me finally becoming a shutin a decade ago.  I am autistic, and while I am capable of verbal communication much, even most of the time, this is not always the case. I have lived with periods of being nonverbal my entire life, just never knew what or why, even periods of mutism (which is harder/scarier) for me me because then I'm incapable of using typed/written words to communicate at all.  When I'm nonverbal I was able for years to still use written/read language, I'm just physically incapable of making the sounds that go with those words. When I'm mute, the part of my brain that turns thoughts/feelings/and such into words/sounds stops working, so language becomes largely useless to me.

I also have long grappled with what I now know are meltdowns, and trying to reach me, or touch me, or make me behave or respond in expected fashions can be problematic. Thankfully, for me, meltdowns are not violent or destructive, I just collapse into my self and cry, sob, and often get stuck for a while.  I also have always experience periods of autistic catatonia, where my mind shuts off and I freeze up.  Anyway, this post isn't really about what I live with, it's about really being able to finally relate to a carry letter on a personal and deeply meaningful level.  A while back, an autistic advocate, a gifted and brilliant woman with multiple college degrees was quite literally kidnapped and held incommunicado under the color of law. In a sham evaluation and direct violation of her rights as a disabled person her AAC communication device was taken from her, she was declared mentally retarded, and became a ward of the state without having anyone stand up for her. Her rights were so horribly violated so quickly, that all the hard work my doctor had been doing to help me adjust to using an AAC, and having escaped my own diagnosis of mental retardation when I was 8, my fear and trauma flared up somewhat badly.

I was already a shutin 11 years ago when a phone call looking for answers from a government official after a meltdown triggered another meltdown. Mind you the first meltdown was caused by a government official in person earlier in the day. Anyway said government official kept me talking on the phone, called the local police and EMS and had me taken from where I was living and locked in a padded room.  Because of a meltdown.  Again these were people who were supposed to be protecting me, instead they spend the day further traumatizing me, and then locking me away in exactly the fashion that was literally beaten into my head and heart as a child. My father had always threatened that one day "they" would come and lock me away never to be seen again.

Be it a meltdown, flapping, rocking, being nonverbal, mute, catatonic or any number of things, his answer to everything was they would lock me away. December 23 of 2005, it finally happened.  Other times I have come close. Lost it a few years ago, pulled into a parking lot, shutdown the car (yes, I'm autistic and I can drive. Took me a while to get there, but I can and do.) and had a meltdown, in an empty parking lot.  A police officer showed up and wanted to take me to the hospital, because apparently he decided I was a danger to myself or others.  Fearing again a repeat of 2005, it took a great deal of energy I didn't have, to appear "functional enough" to escape getting locked up, again.  Because I was sitting in my car rocking, crying, sobbing and melting down.

Having lived through these experiences without having an accurate diagnosis and having been repeatedly traumatized, the news of the young woman in Colorado, who is still being held against her will and not allowed proper communication or care, let alone freedom or rights of any kind, was a blow to progress I'd been making with my doctor.  The fear became more real, more pressing, and my concerns about using an AAC took on a whole new urgency. Having and using an AAC is new freedom to me, especially now that my doctor worked so hard with me to help me reach a level of comfort where I could not only leave the house when nonverbal, but have a means of living and communicating without being able to speak. Part of the work to reach that state, was having my autism doctor encourage me to spend days when I could still speak, not speaking, and use my AAC instead.

As many people of my neurotype do, I have trouble with change. The doctor I've made so much progress with in the last almost three years was offered a wonderful career opportunity many states away. While being at once thrilled and pleased for her, my fears, many of which where held at bay because she was there to stand with and for me if someone who didn't understand or know locked me away again. She wouldn't be there anymore.  Also an issue for me were half a centuries worth of doctors and other people just deciding no, you're not living with PTSD or whatever, let alone the "you can't be autistic, you're a girl" or "you're so high functioning*" or "you don't get to decide you're autistic/living with PTSD" or whatever, the concept of a carry letter, an official diagnosis that I kept in my own records, in my own possession became so very important to me.  In fact it wasn't until I read the letter she'd asked me to review when I expressed concerns about her leaving that I even realized it was, is not just confirmation of my official diagnoses, but a carry letter as well. I should also point out that unlike my GP, my autism doctor worked hard to find a replacement that I can continue working with, and she assured me all my records would remain available, and I'd still be able to stay in touch with her.

 Anyway suddenly, that one page took on new meaning and importance for me. (names have been changed where appropriate to protect the innocent.)

To Whom it May Concern,

Samantha Shanti has been my patient since 12/12/2013 and has been diagnosed with Aspergers Disorder, as well as, Posttraumatic Stress Disorder.  Because of her conditions, Ms. Shanti can become overwhelmed at times, making it impossible for her to speak.  This is not a reflection of her cognitive functioning or ability to care for herself.  When unable to speak  she is still able to communicate through use of  an electronic augmentative and alternative communication system (AAC), which is a device used to supplement or replace speech and/or writing for individuals who are unable to verbally communicate their needs.  Removal of this device from her possession would be a violation of her human rights as an individual with a disability. 

When overwhelmed Ms. Shanti may also engage in various behaviors to calm herself, such as hand flapping, pacing, or rocking her body back and forth.  These are coping skills through which Ms. Shanti is able to calm herself when distressed. Again, these behaviors are not a reflection of her cognitive functioning or ability to care for herself.  When engaging in these behaviors Ms. Shanti should be left undisturbed and allowed to use her skills to calm herself.  Do not attempt to touch Ms. Shanti or get into her personal space at these times, as this is likely to increase panic and distress.

Ms. Shanti’s use of her AAC and coping skills are essential to her daily functioning and should not be used as evidence of inability to care for herself, evidence that she is mentally unstable, or evidence that she is a danger to self or others.

Ms. Shanti is not a danger to herself or others.
Ms. Shanti is highly intelligent and capable of caring for herself adequately.

Please feel free to contact me with any questions or concerns you may have.

Regards,



Janet Fraizer, Psy.D.

It wasn't really till I read it, that it dawned on me I should have had one of these all along. And that it was for me, a carry letter every much as my Trans family and friends have their own kind of carry letter.  So finally I more than comprehended, I understood, just how important a "carry letter" can be.  I had notarized copies made, one to keep in my car with registration and insurance, one to be kept in my purse and one to give to my Primary Care Physician who has also just changed. The originals are locked in my safe at home with things like my birth certificate, social security card, passport book, and other important paperwork.

*I really don't like, agree with, or see the point in "functioning levels" for so many reasons, not the least of which is because it takes so much work for me to "appear" high functioning, and at times is like teaching a fish to ride a bike. There are days, even weeks when its all I can do to sit in a dark corner, wrapped in a weighted blanket, rocking and crying because they world is all too much.  Hardly high functioning.  The last 8 years have been the first and only time in my more than half a century that I have lived completely alone and cared for myself. It's a victory, and a new kind of freedom, and most importantly, proof I can care for myself.