The original Spoon Theory was created by Christine Miserandino to explain living with Lupus to her friends. Since then, many people have picked up the metaphor and applied it not only to diseases, but to various disabilities as well. I know many people in the Autism communities who use the metaphor as an expression. I myself have attempted to merge Spoon Theory with my own metaphors of Batteries, and use the expressions in my regular life, with spoons being used more frequently than batteries
Lately, I have found myself and my friends being creative with the metaphor. For example, "my spoons are too big for that", "my spoons are too small" and "I don't have the right type of spoon for that".
As my friends and I have discovered, people can have different size spoons and spoons that do different things. Take a look around a kitchen. There are measuring spoons, teaspoons, tablespoons, serving spoons, soup spoons, stirring spoons, salad spoons (okay, those are tongs, but they look rather like spoons to me). There are spoons designed for certain tasks and certain uses, and there are general, all-purpose spoons.
In the world of spoons, there is a great diversity that can be used to expand the use of Spoon Theory from being a metaphor to being an expression, a key wording to expain why someone is withdrawing or leaving ("I need to get more spoons") or as a short form for why someone cannot currently do something that they might have been able to do before ("I don't have that spoon right now").
Spoons are the tools, abilities to access and take our energy (batteries, as I've previously called it) to do things. Sometimes I've had spoons that are totally not right for the task I'm supposed to do. Sometimes I have spoons that can't access the energy I know I still have to do something. Sometimes my spoons are too small for a job. Sometimes they're too big. Sometimes I can use what I've got to do things, even if it's not the right spoon, and sometimes I just can't.
My friends say that their spoons are too big if it's tough. As in, it takes more energy-brain power-ability to do something. If it's a small spoon job, then it's a pretty easy task, maybe one that can be done without thinking too hard about it. We joke about each of us having different spoons as our "regular" spoons, some of us using teaspoons, while others use ladles.
Sometimes I have too many spoons, sometimes I have too many and have left overs at the end of the day. I wake up each morning never too many spoons I have, because sometimes I don't actually know, like they're hidden and only revealed to me throughout the day. So I ration spoons carefully, because it might be one of those days where I'm in danger of coming up short in the end. Because if there's anything that I've learned, it's that I can never totally forget that it costs me to be a part of the world, and that I always could use a few more spoons.
Wednesday, July 11, 2012
Thursday, June 21, 2012
Autism Project Ideas
Autism project ideas that I have no clue how to start/run
- Autistic mentors network, connecting young Autistic people with older Autistic mentors, a sort of You Are Not Alone, we can get through this together thing to help with self-esteem and mental health issues
- a guide to give to house/room mates of Autistic people. I find it so exhausting to try and educate each housemate I encounter, and find I forget the little things, like the need to have plates stacked a certain way, my annoyance in wet floors, and sensory issues. It’s great that there’s materials for Autistic people, but what about the other people in the household? Why do we always have to be the ones to compromise? Especially when other members are willing to learn about what we need to live comfortable?
As for the network, haven’t heard much about that sort of thing, but I think it might be good to have. It just seems like something that I don’t have the spoons to do.
Tuesday, June 19, 2012
An Autistic at IMFAR 2012
I finally got my article done on IMFAR 2012. Whew!!!
It is quite long! Instead of dividing everything up, I did one big article on Storify, because then I could snag the tweets I did throughout the week.
I'm very sorry it took so long to get this done; I hope it's worth the wait.
Because the Storify format can cause lag on people's computers, I'm just going to link to it on here.
It is quite long! Instead of dividing everything up, I did one big article on Storify, because then I could snag the tweets I did throughout the week.
I'm very sorry it took so long to get this done; I hope it's worth the wait.
Because the Storify format can cause lag on people's computers, I'm just going to link to it on here.
Crisis with the Help Lines
You know those crisis help phone lines? The woman's shelter lines, the pregnancy lines, the talk help, kids help lines, and mental health crisis lines? Those. It has occurred to me that those help lines are kinda ableist.
Think about it. They all require people call them over the telephone and speak to them.
In a time when you can get customer service over an internet live chat, where are the help lines for people who are non-verbal, people who communicate better in written or typed word, or who are so into crisis mode that they lose all verbal capabilities? Or people whom English is not their first language or whom aren't fluent in English? Or who have sensory problems and have difficulties using a telephone? Or are in a situation where they cannot seek assistance through their caregivers to communicate the crisis?
Also, when in crisis, it can be very hard to verbalize the pain and what going through, even if one does retain verbal capabilities. Failure to address the needs of the non-verbal population means that there are people who are not being supported or have access to community resources and accommodations. This leads people further into crisis, with no where to turn for help.
So when someone goes into crisis mode, they also go into survival mode, a state where someone purposely or subconsciously shuts down skills in order to cope. This is dangerous, because now the person have further difficulty in accessing community help and services, cannot communicate, and is more vulnerable to further crisis, including escalation into self-harm coping strategies. The longer in this state, the pain caused by the crisis can lead to extreme measures of self-harm, eventually leading to suicidal behaviour.
At this stage, there are more than one crisis; the initial crisis and the mental health crisis. The results of care then become dependent not only on the structure of support for that person, but also the preparation of local mental health services in dealing with complicated crisis situations.
Now, there are online resources available for mental health crisis, such as the list provided by Boggle, including a Forum and live-chat online services. However, there needs to be access to non-verbal crisis support across the global, and a connection to local mental health services. With many service providers, crisis support phone lines already exist, and they maintain a team to respond to calls. What if there was also a way to text into the crisis line? What about maintaining a Twitter and/or Facebook account, where it's possible to private message the operator? Monitoring Twitter and Facebook messages can be done while monitoring a phone line. There is also the option of a Forum, where there can be group support and private messaging options for daily support as well as crisis support.
Non-verbal accessibility is possible, and is incredibly valuable to a wide population, not just non-verbal Autistic people. It has the possibility of connecting mental health services to the online communities, to people who cannot otherwise access much needed support. Yes, it does require making adjustments, getting people to write code, retraining employees, and other costly changes. But this is an area of need within the disability and mental health communities that is not being adequately met, resulting in the isolation and despair of many. It also sends out a negative message to people, that their needs are not deemed worth to be addressed, that their crisis, their methods of communication, are not significant.
In my opinion, it is the obligation of mental health services to develop ways to make their services accessible to all. Otherwise, they are failing to help the people that they are suppose to support, a failure that can have drastic and fatal results. Yet, it is possible to correct this, to make crisis and other types of support accessible, if service providers are able to embrace alternative, online and text-based methods of communication. Then truly they will be able to reach those who need their services.
Think about it. They all require people call them over the telephone and speak to them.
In a time when you can get customer service over an internet live chat, where are the help lines for people who are non-verbal, people who communicate better in written or typed word, or who are so into crisis mode that they lose all verbal capabilities? Or people whom English is not their first language or whom aren't fluent in English? Or who have sensory problems and have difficulties using a telephone? Or are in a situation where they cannot seek assistance through their caregivers to communicate the crisis?
Also, when in crisis, it can be very hard to verbalize the pain and what going through, even if one does retain verbal capabilities. Failure to address the needs of the non-verbal population means that there are people who are not being supported or have access to community resources and accommodations. This leads people further into crisis, with no where to turn for help.
So when someone goes into crisis mode, they also go into survival mode, a state where someone purposely or subconsciously shuts down skills in order to cope. This is dangerous, because now the person have further difficulty in accessing community help and services, cannot communicate, and is more vulnerable to further crisis, including escalation into self-harm coping strategies. The longer in this state, the pain caused by the crisis can lead to extreme measures of self-harm, eventually leading to suicidal behaviour.
At this stage, there are more than one crisis; the initial crisis and the mental health crisis. The results of care then become dependent not only on the structure of support for that person, but also the preparation of local mental health services in dealing with complicated crisis situations.
Now, there are online resources available for mental health crisis, such as the list provided by Boggle, including a Forum and live-chat online services. However, there needs to be access to non-verbal crisis support across the global, and a connection to local mental health services. With many service providers, crisis support phone lines already exist, and they maintain a team to respond to calls. What if there was also a way to text into the crisis line? What about maintaining a Twitter and/or Facebook account, where it's possible to private message the operator? Monitoring Twitter and Facebook messages can be done while monitoring a phone line. There is also the option of a Forum, where there can be group support and private messaging options for daily support as well as crisis support.
Non-verbal accessibility is possible, and is incredibly valuable to a wide population, not just non-verbal Autistic people. It has the possibility of connecting mental health services to the online communities, to people who cannot otherwise access much needed support. Yes, it does require making adjustments, getting people to write code, retraining employees, and other costly changes. But this is an area of need within the disability and mental health communities that is not being adequately met, resulting in the isolation and despair of many. It also sends out a negative message to people, that their needs are not deemed worth to be addressed, that their crisis, their methods of communication, are not significant.
In my opinion, it is the obligation of mental health services to develop ways to make their services accessible to all. Otherwise, they are failing to help the people that they are suppose to support, a failure that can have drastic and fatal results. Yet, it is possible to correct this, to make crisis and other types of support accessible, if service providers are able to embrace alternative, online and text-based methods of communication. Then truly they will be able to reach those who need their services.
Friday, June 1, 2012
Still Here
 |
| My badge for IMFAR |
I have most of my report on IMFAR done, I'm just working on the last day. It's taking a while because all of a sudden I'm having bouts of over-sleeping and insomnia, which is messing with my schedule, including taking meds.
I'm also trying to keep on top of a class that is very heavy on the class participation (arg) and is in seminary format. Meaning, group work!!! Group work to look over the readings for the week and then lead the student discussion.
And I was in charge of the week right after IMFAR and it feels like the attention and focusing parts of my brain are on strike.
Anyways, report will be up soon.
Thursday, May 17, 2012
Tweeting at IMFAR
I'm tweeting at IMFAR! Make sure to follow me @CorinaBecker! I'll also be putting together a summary when I get back and have more easier blogging from my tweets.
- Posted using BlogPress from my iPhone
- Posted using BlogPress from my iPhone
Sunday, April 1, 2012
Where are the autistics? Or why I'm not going blue for autism awareness
This isn't to say that there isn't some good from the world autism awareness day and general autism awareness month. Definitely some good can happen from people being aware and people who usually don't blog about autism to 'come out' about it.
Problem is that there is something called negative awareness, which harmful misinformation and stigma is spread. Contrary to popular belief, intent does no erase harm, nor does it excuse the damage. There is much potential for good, but there is also the potential to spread the harmful attitudes that contribute to ableism, abuse and hate faced by autistic individuals and disabled people. Without acceptance and inclusion, even the most well-meaning awareness can go horribly wrong for the people it's trying to help.
"But Corina, isn't that incentive for you to add your voice to the day/month?" I hear the argument, that I should join in order to present both myself and the autistic community. And to be honest, a few years ago I would agree and eagerly pull together some hopefully inspirational piece on community, or try for some insightful look at my life as an autistic adult. But not anymore. Now I save those words for when I'm actually inspired to write them, when I'm not treating my activism like a school assignment, trying to write something by the deadline.
There are also other reasons why I will not join in. One is that with so many 'voices' during April, it is some times very hard for autistic people to be heard, even during awareness events supposing to be about them!! Yes, there are pockets where a conscious effort is made to follow "nothing about us without us". Yes, I am happy about that, and yes, usually i don't concern myself with how many people I reach. But for this, it's more about the principle of the matter; I shouldn't have to compete in order to be heard.
I refuse to turn my activism into a competition of how loud I am. I also do prefer substance over quality. This is part of why I haven't been updating as often, even though I have a couple of articles waiting in draft. The other reason for my lack of regular updates leads to my next reason for not deliberately being a part of autism awareness month*.
I'm tired. Not tired enough to give up writing, but enough that I have to be careful with how I spend my batteries and spoons. And it's more than just being tired of having to be on top of everything and the feeling that I have to comment on every little drama in the communities (seriously, I got out of a lot of fandom communities due to drama; it's just a waste of energy sometimes).
I'm really busy. It sounds like an excuse, but it's the truth. I write a lot on autism, because I am Autistic, but I'm also ADHD and Learning Disabled. I am in school, which means reading, writing assignments and essays, and a lot of sleepless nights. On top of that, I work retail in a position that uses a lot of my weaknesses instead of my strengths. Some how, between all that I squeeze in a modest social life and my household chores. Between all THAT, I squeeze in self-care, both physically and mentally. I sometimes have to remind myself that this is all a part of being a responsible adult and not to mentally beat myself up for 'taking a break' and not being productive. Taking care of myself means letting myself enjoy things, like playing a game, watching a movie, reading a book, painting, writing novels, drawing comics, and knitting.
Sometimes, I have to make a choice between writing activism or taking care of myself. This is actually a lesson I had to work with therapists to get, to be 'selfish' and do what's right for me instead of burning out. This also means choosing which autism events I participate instead of jumping at every event that I hear about. I'd much rather focus on events that I know will be building positive awareness and promoting acceptance and inclusion, not to mention pride.
So, to wrap it all up, I refuse to turn my activism into an assignment, competition, or burn myself out, especially when 'autism awareness' is what i do all year long, not just one month or day. And that is why I am not 'going blue' this month.
*other than the fact that I'm Canadian and autism awareness month is a US thing, primarily. I've never really been one to let a border get in my way when I have the means to do something I want. Never mind... apparently Autism Awareness Day has come to Canada, as a bunch of buildings in Toronto are being lit up in blue. Nicely enough, I see that proceeds to some of the events go to a few Autism organizations that I personally know to be pro-neurodiversity.
Problem is that there is something called negative awareness, which harmful misinformation and stigma is spread. Contrary to popular belief, intent does no erase harm, nor does it excuse the damage. There is much potential for good, but there is also the potential to spread the harmful attitudes that contribute to ableism, abuse and hate faced by autistic individuals and disabled people. Without acceptance and inclusion, even the most well-meaning awareness can go horribly wrong for the people it's trying to help.
"But Corina, isn't that incentive for you to add your voice to the day/month?" I hear the argument, that I should join in order to present both myself and the autistic community. And to be honest, a few years ago I would agree and eagerly pull together some hopefully inspirational piece on community, or try for some insightful look at my life as an autistic adult. But not anymore. Now I save those words for when I'm actually inspired to write them, when I'm not treating my activism like a school assignment, trying to write something by the deadline.
There are also other reasons why I will not join in. One is that with so many 'voices' during April, it is some times very hard for autistic people to be heard, even during awareness events supposing to be about them!! Yes, there are pockets where a conscious effort is made to follow "nothing about us without us". Yes, I am happy about that, and yes, usually i don't concern myself with how many people I reach. But for this, it's more about the principle of the matter; I shouldn't have to compete in order to be heard.
I refuse to turn my activism into a competition of how loud I am. I also do prefer substance over quality. This is part of why I haven't been updating as often, even though I have a couple of articles waiting in draft. The other reason for my lack of regular updates leads to my next reason for not deliberately being a part of autism awareness month*.
I'm tired. Not tired enough to give up writing, but enough that I have to be careful with how I spend my batteries and spoons. And it's more than just being tired of having to be on top of everything and the feeling that I have to comment on every little drama in the communities (seriously, I got out of a lot of fandom communities due to drama; it's just a waste of energy sometimes).
I'm really busy. It sounds like an excuse, but it's the truth. I write a lot on autism, because I am Autistic, but I'm also ADHD and Learning Disabled. I am in school, which means reading, writing assignments and essays, and a lot of sleepless nights. On top of that, I work retail in a position that uses a lot of my weaknesses instead of my strengths. Some how, between all that I squeeze in a modest social life and my household chores. Between all THAT, I squeeze in self-care, both physically and mentally. I sometimes have to remind myself that this is all a part of being a responsible adult and not to mentally beat myself up for 'taking a break' and not being productive. Taking care of myself means letting myself enjoy things, like playing a game, watching a movie, reading a book, painting, writing novels, drawing comics, and knitting.
Sometimes, I have to make a choice between writing activism or taking care of myself. This is actually a lesson I had to work with therapists to get, to be 'selfish' and do what's right for me instead of burning out. This also means choosing which autism events I participate instead of jumping at every event that I hear about. I'd much rather focus on events that I know will be building positive awareness and promoting acceptance and inclusion, not to mention pride.
So, to wrap it all up, I refuse to turn my activism into an assignment, competition, or burn myself out, especially when 'autism awareness' is what i do all year long, not just one month or day. And that is why I am not 'going blue' this month.
*
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