Only if you have suffered from the disease can you understand the extent to which food takes over your life. Someone I love dearly struggles with Anorexia – a nasty disease.
The ways to an eating disorder are many. Aspies are some of the people particularly at risk for such behaviour. Sometimes the eating disorder is the only control we have over what can feel like a chaotic and confusing life. We are certainly not the only ones who struggle with things like Anorexia, Bulemia, Overfeeding, Extreme eating routines and so on. Once you are caught in that prison, it is difficult to get out and like Baird says in her poem, people around you may end up making it even more difficult to escape.
Over on the silent wave, Liana makes a plea not to demonise autism. Get to know us. What makes us different is nothing to fear. Look, I am surrounded by non-autistic people, and while I might never understand their way of seeing the world, I see no reason to be afraid of them, or their […]
Demonizing autism brings in money from parents and loved ones who want to “cure” this terrible “disease”. Fear is a commodity in this world. People and institutions push that fear until rational behavior disappears and witch-hunts begin. The US has been at a tipping point for a long time. Autists are not the only “different” people who become sales pitches for callous institutions and individuals. There is a reason someone invented the “bleach-cure” for autism. Concern about parents or autistic children had nothing to do with it.
It’s OK to think of us as people. It’s more likely that you will destroy me than that I will destroy you.
Finally, a frank conversation about disability and periods. My period arrived when I was about 12.5. It was an embarrassing day. Since then, I have wished it away. Slowly, that wish is coming true. During these 40 years of monthly bleeding, I have tried the traditional products (pads and tampons) but never alternative menstrual products (like menstrual cups/menskopp). I cannot use tampons and I would guess that I am not alone in that. Nor can I use silicone products and had no clue there were alternatives. Thankfully, crippledscholar has had experience with various menstrual products and brought the topic into the open. Like she says, there are considerations that people with disabilities have to think about that are irrelevant without disabilities. Maybe my last periods will be more comfortable than the previous ones have been.
Let’s Talk About Disability, Periods, and Alternative Menstrual Products
Posted by crippledscholar on July 8, 2016
There is so much I want to say about disability and menstruation. So much that I could never fit it into a single post. I have noticed that there is very little written about disability and menstruation generally and what little there is is most often not written by disabled people. As a result a lot of it is about control and often menstrual cessation in order to make the menstruating person more convenient for a care giver. This sometimes goes so far as sterilization of the disabled person.
The dearth of material on disability and menstruation from the disabled perspective likely has a number of influences that include the fact that menstruation is still unfortunately a taboo subject generally that people are embarrassed to talk about. Add to that the very idea of disability and sexuality is also still (somehow) widely denied. Which is, I suspect why so many nondisabled people feel so comfortable talking about period cessation as a reasonable solution to disabled people who have periods.
This focus on just stopping the whole business of menstruation is frustrating because it primarily marks the disabled body and its natural functions as too inconvenient. It also means that for those of us who do menstruate that we are left with disability specific information on how to deal with our periods.
It is the latter issue that I’m going to deal with now because the first issue while so important is just to big for me to handle right now.
I am going to talk about disability and the accessibility of alternative menstrual products.
Unfortunately, I am just one person with just one kind of disabled body and so nothing I say will have universal application. This is one of the reasons why we really need more disabled people to share their stories and experiences. If you have a different experience please share it in the comments or write your own blog post about it and share that in the comments.
Hopefully in spite of this I will have something useful to say or spark a conversation to get more voices heard because I really feel that it is essential to demystify and destigmatize not only menstruation and particularly disabled people menstruating.
For context (to see if what I say will translate well for you) I have left side hemiplegic cerebral palsy and am autistic. So most of what I have experience with is dealing with menstruation literally single handedly and the sensory aspects it entails.
I started menstruating when I was 11 and have primarily used pads as my go to feminine hygiene product. I found tampons difficult and uncomfortable for pretty much my entire childhood and teen years. I only started using them rarely when I was well into my twenties.
I have never found pads to be particularly comfortable and couldn’t manage to deal with anything other than the thinnest option. I’m still not a fan of tampons. I find the uncomfortable but sheer pragmatism has forced me to use them occasionally. I am always hyper aware of them the entire time that I do.
In the last decade or so alternatives to the standard and and tampon methods of dealing with menstruation have become more mainstream (though they have definitely existed longer than that).
Alternative period products are generally washable and reusable and are considered to be both more environmentally friendly and more cost effective.
The oldest alternative period product is probably the menstrual cup …………..
I am not a fan of Autism Speaks and their tactics. There is not enough autism and too much speak in their club. So much of their work goes toward demonizing autism and terrifying parents into supporting them and their “cure” theories. Really. Folks. Stop patronizing us.
“Remember to put the person first! It’s a “person suffering from allism” not “allistic person” no matter how many times they try and tell you otherwise. It’s disrespectful to allow them their own choice in how they’d like to be referred.” (Tone it Down Taupe)
Friends, I want to talk to you about autism awareness awareness. We are, I fear, on the verge of an autism awareness epidemic, a veritable tsunami of awareness. Once a relatively rare phenomenon, the ailment, which is most commonly characterized by non-autistic people engaging in public handwringing about autism and/or feeling inspired by those tragically touched by neurodevelopmental disorders, has become increasingly common over the past decade. Some speculate that, within the next few years, as many as 1 in 2 people could have an awareness of autism.
In theory, more people knowing more about autism spectrum disorder would be a good thing. Autistic people, like me, could certainly benefit from the general public having a greater understanding of what our lives are like, and maybe even some genuine acceptance of those lives in whatever form they take. Increased awareness would be an excellent first step toward those goals. But the kind of autism awareness that is currently celebrated in day (April 2) and month (the rest of April) form was never made for people like me. I’d argue that it was never really made with anyone on the spectrum in mind at all.
The most nefarious incarnation of autism awareness is the kind espoused by Autism Speaks, which treats autistic people as little more than props in its various campaigns. The prominent charity’s simple and dishearteningly effective message—autism is bad and it must be stopped—misrepresents a complex condition and identity as a sinister looming specter that can and should be cured. It reduces the people who have autism to damaged, voiceless zombies bringing suffering to everyone who loves them, when in fact we are disabled human beings who might require treatments and accommodations unique to our circumstances. And Autism Speaks’ ends might actually be worse than its means, given that so little of its budget goes toward helping autistic people and their families……………………
Some Aspergers/Autists have no co-morbid conditions. Like the general population, many of us do. One of these is Bi-polar Disorder. As with so many disorders, I wonder how people survive being bipolar and how people survive living with a person with BPD. PBS sent a one-hour documentary about highly accomplished US individuals who are diagnosed as bipolar. Not all who struggle with this disease are able to be what society considers highly accomplished. Treatment is required for a person to live an average and healthy life.
Often when I use the words “equal rights”, there is an assumption that I am going to say something negative about men. Granted, there are a few men out there I would like to rant and rage against, #Drumph being the most obvious one at this time. However, equal rights means equal rights: that whoever/whatever I choose to fight for gets to have the same rights I would accord, if I could, to any person I like. I have chosen to fight for equal rights for people and animals. I do that one post, one individual, one conversation, one mail at a time. A militant attitude towards any kind of life doesn’t work for me. My Aspie mind becomes confused at the rhetoric that often lacks logic and has a one-sided view of the world.
I might have been that militant some years ago. Aspies are probably more susceptible to being manipulated into that kind of thinking. At least I am. But once I confronted my own deep-held beliefs about many topics (yes, including religion), I discovered I had been wrong. Admitting to being wrong sucks royally. But once I understood the psychological processes involved, it somehow became easier. Now I know that most of my understanding, opinions and knowledge is flawed. I also know that is true for the rest of the world. So, I seek to inform myself. For each new understanding, I see that there is so much more I do not understand. I guess that is kind of a dream condition for my type of Aspie. Digging into information and understanding the human mind is a need for me. Understanding the human mind is my “interest”, insofar as Aspies have special “interests”.
Poverty is an area of the human condition I would like to see reduced, even if that means I must give up something. Cause that is what equal rights is all about. The have’s (whether it be power or wealth) must share with the have not’s. A thanks to “Max Waller” who shared this youtube video on his Twitter. One part of fighting against poverty means fighting consumerism.
Gone Wild has posted an article about some of the many baffling ways of thinking non-ASDs seem to do. I completely agree with her words. So many ways of thinking and doing things in the non-ASD world make no sense at all.
“More Mind Boggling Neurotypical Beliefs
I want to be frank about neurotypical beliefs that I find shocking. I attribute my reactions to having a “real world” factual and concrete Asperger brain, although I can’t say that every person diagnosed Asperger would share my reactions. We are individuals, with our own ways of seeing and interpreting the environment.
These strange beliefs have to do with death, revenge and punishment.
An jetliner vanishes over an ocean. Exhaustive searches take place long past the time interval that any passenger could survive under the best of conditions; the possibility is zero. Speculation goes on and on for months. Miracles are deemed possible: soon the airplane with everyone alive will materialize “out of the blue” due to supernatural intervention caused by prayer. The families cannot accept that their loved ones have died. They become angry if they don’t receive a body; they must have a body to prove that the person is dead, otherwise they can’t achieve “closure.”
I’m not indifferent to suffering; I’ve lost family members and it has taken years to reexamine my relationships – this process toward understanding will continue until I die. “Closure” is a strange idea.
What baffles me is the state of limbo in which dead people remain for an extended time, that is, in the mind of the survivors; as if the person is in limbo in a quantum state: is he or she dead or alive? Only Schrodinger’s cat knows. It’s as if the person doesn’t die until the wreckage is found and bodies are identified, despite the overwhelming evidence that all on board died weeks or months ago. These traditions and beliefs run deep. The “quantum dead” effect is simply strange.
A closely related belief is that “the remains” of a person contain an “essence” that can be recovered if the bones can be located and returned to descendants, or to a specific location. The act of placing the remains in a designated cemetery where “the person” can be visited, is believed to “honor” the dead and to confirm an event that happened decades before. This is an old tradition based in magic: bones are believed to possess contagious magical power. The Middle Ages were awash in the relics of saints, Kings, Queens and other powerful folk, and existing shrines are mobbed by pilgrims to this day. This tradition as deeply human, but I think it is healthy to accept that when the body dies, the person dies. What remains are memories.
What shocks me the most is that nations make a great display of “honoring” dead soldiers, but fail to honor living soldiers who have paid an enormous price in physical and mental trauma.
Any person who dies unexpectedly, due to an accident or a crime, immediately becomes the “best person who ever lived.” This story-making is repeated over and over again, and I think much of the blame goes to the media’s intent on ambushing the victim’s family just as they receive the tragic news.
Regardless of circumstance, according to family and friends, the dead person was a great humanitarian who loved the world, was kind, helpful, generous, and if religious, a dedicated member of the faith. Pretty remarkable life history for anyone, and in some cases attributable to expected social exaggeration, but by repetition these fictions become true in the minds of many. What if a long history of drug abuse, criminal activity, domestic abuse or a willingness to “con” family members emerges? The person remains a saint: is this denial, face-saving, shame? Does a social “law” exist that says only “good people” can be mourned (only good people count.) Why must people lie about loved ones?
As an Asperger, I believe that everyone counts; each human life ought to be acknowledged and absorbed into the pageant that is humanity.
Revenge and punishment = justice. This is a tough one; revenge is an impulse that can destroy a fair legal system, and needs to be recognized for what it is: magical thinking. The American system is highly variable, with laws, criminal prosecution and periods of incarceration in a “correctional institution” determined state by state. Other crime and punishment is controlled by the Federal courts. It is not these idiosyncratic systems that I can address.
Revenge as a driver of human behavior is familiar, and is a major cause of wars large and small, and drives conflict between ethnic, cultural and religious groups; between families, businesses etc. The resolution of conflict in many cultures was/is a matter of payment in kind: your uncle looses control and kills a man he suspects of cheating him. That man’s family vows revenge – kill the uncle! But an arrangement is made to “pay for” the death. This may seem cold or unfair to the victim, but the victim is already dead. Nothing will bring him back. Why should the living be dragged into an endless cycle of violence?”
I review books. I have done so since April 2012. Where that idea came from is a puzzle. There is such a huge amount of review blogs, it seemed wasteful to add another. But the thought kept nagging. Choosing a platform (WordPress, obviously) was based on how comfortable I felt with the product. Some time was spent familiarizing myself with the how’s of blogging (not finished learning yet) and setting things up. humanitysdarkerside was set to go. Writing my first post was frightening.
Writing posts was/is a struggle for me. In the beginning I had absolutely no idea what reviewing books was about. Looking at other reviewers out there helped, but everything I tried felt unsatisfactory. Even so, I kept on slogging along hoping I would have an epiphany. No revelation for me, though. Instead a slow realization that my individual voice might be worth reading occurred. I hadn’t seen any ASD/Aspergers voices out there talking about fantasy/science fiction. They might exist, but I haven’t come across them. Until I started using my experience to talk about my books, humanitysdarkerside seemed to be in a no-woman’s-land.
Then I started writing a post about Zane Grey, and it kept on growing and growing and growing until it was much too long for a blog post. So I did what any sensible ASD would do and created another blog, this one called ZaneGreyandMe. It contains anything and everything I am able to dig up about the romances (later called Westerns) Zane Grey wrote. That is the kind of blog I did not know I dreamed about creating. But the work. Oh, the work. Along the way I have learned a great deal about Internet etiquette and copyright. I’m still having to go back and correct such mistakes.
Finally, I gave up on having Terry Pratchett on my regular blog. I am a fan of his stories. A true blue fan. Which is why I had so much about his writing on humanitysdarkerside. Instead I brought TerryPratchettandMe to life. Much as ZGM, TPM is a blog about Pratchett’s stories and the trivia seen from an ASD/Aspergers’ point of view. I’m pretty certain I have gone overboard with my blogging, but such is life.
Ambivalent is most likely the word that best describes my feelings towards writing. Getting thoughts out of my head and onto paper is a struggle every single time. What I start out writing is NEVER what I end up with. Sometimes the post changes completely. This one certainly has. But I need to write. Go figure. If anything, my admiration for serious authors has increased immensely. I have gotten to beta for a couple and being part of their thought process has been an honor.
One author claimed I was being too nice to her, but I did not feel I was. I just do not see any point in bashing a person who obviously had tried their best. Showing areas that need to improve does not have to be cruel. Sometimes I do not write about a book after a review request. If their writing is terrible or even gruesome (have had some of those), I send them a personal mail explaining why I could not write about the book on my blog.
Most of my reviews are on books I want to write about. I seldom receive requests, but read ALL the time. Perhaps that is my main reason for having three review blogs – my love of the written word.
This post from October 2014 has been moved from my book-blog to Identities.
Saturday I had my first major melt-down in a long time. I was at a family gathering. My family is loud. So am I. All of that loudness over a long time becomes confusing. I cannot help but hear everything that is going on, and concentrating on one conversation takes a lot out of me. Add to that strong emotions from a few of the participants and visual stimulus and I was teetering. The thing that pushed me over the edge was that I had been overly optimistic about the time my medication would last.
All of a sudden I knew I had to get out of there. If I didn’t I had no idea what would happen. Major melt-downs are like that for me. Thankfully, my husband saw that all was not as it should be and we got the crew going. Driving home I had to keep my eyes shut tight, put my fingers in my ears to lessen the volume and bend forward. Then I breathed as well as I could and kept on trying to get myself back on the edge. When we got home, I took my medication and went into my room, wrapped myself in our duvet and read a book.
That was when it hit me. I had kind of guessed that this was my method of handling the world when I was younger. But the feeling of desperation and pain that I felt Saturday evening and the relief it was to hide brought back memories of childhood.
My parents had no idea I am Asperger. Whenever I tried to hide at parties (i.e. hide behind a magazine or book) they thought I was being rude or pouting. At home I had to get away at times and hid in my bed all covered up and behind a book. My family thought I was out of sorts and would try to cheer me up. The thought was kind enough but just made matters worse. I was often accused of pouting. Looking at it from an objective point of view, I can see how it would seem that way. But pouting was the last thing I was doing.
I hate being dependent on my medication, but I dislike melt-downs even more. I love parties and noise. But once my level of stimulus tolerance is reached, I need to leave or find a quiet place. Being reminded of how long my strategy has been used and how comforting it is to me was interesting and educational. I wish I could have avoided my melt-down on Saturday. At the same time I am thankful for the trip down memory lane and all that it taught me.