Friday, August 23, 2013

How to be an Ally to Sick and/or Disabled People

Trigger warning: Quoted examples of ableist, patronizing, condescending, or hurtful speech (i.e. examples of what not to do)

The following was also posted yesterday on Autistic Hoya and was written by a mutual friend of ours. This friend gave both of us permission to post it and is also the author of Lydia's blog post "A Guide to Sighted Allyhood" found at the link

How to be an Ally to Sick and/or Disabled People

By "Sick" here, I am talking about people who deal with chronic illnesses like fibromyalgia, lupus, arthritis, multiple chemical sensitivity syndrome, chronic fatigue syndrome, and other physical conditions that are not always immediately noticeable. Some people with more apparent disabilities (like wheelchair users) may also be dealing with similar symptoms, as part of their disability, that are less apparent. (For example people with muscular atrophy, spinal cord injury, etc. might also be dealing with fatigue, chronic pain, etc.)

This is just my opinion, one person's perspective, though I have run it by some other people too. Please don't take this as the gospel though. I welcome additions from anyone who is Sick or Disabled in an often unapparent way.

In each section, I start with the DON'Ts to help highlight the DOs. 

1. Being the Judge. The Judge says: "You were able to do that yesterday." "But you went on a hike with me once." "You don't look like you're in pain though."

Do not make yourself the judge of a person's level of pain, fatigue, etc. Everyone has good days, bad days, in-between days, and you don't know what price they pay to do the things they do. Maybe they went on that hike and spent a week in bed after because they really wanted to enjoy nature and decided it was worth it. This person's care team monitors their health much more closely than you can as a bystander. This person's (chosen) family has seen how their illness affects them much more intimately than you have. Leave it to their support team, and realize that a smile and vibrant look for 2 hours at a party doesn't mean that person isn't sighing or in tears when they go home. If you are not very close to this person, there might be a whole other side you never see. They might not feel like being on public display, and making themselves vulnerable.

An Ally says: "I'm sorry you're hurting so much more today." "I feel honored that you accepted the health risk just to spend time with me in nature." "Wow, you have impressive coping skills for hiding pain."

An Ally recognizes that they do not have the same experience as a Sick person--they do not understand the natural ups and downs and fluctuations. An Ally understands that often when a Sick person comes off as more abled than they are, it's out of a conscious choice to pass, or in other words, juggle perception and reality. An Ally recognizes someone's skills in passing as abled for survival, while only being a source of support when the Sick person lets the pain show, can't hide the fatigue anymore, and respects the person when they choose to be vulnerable and emotional.

2. Being the Doctor. The Doctor says: "You should eat less sweets." "You should stop drinking." "Have you tried acupuncture? Exercise? Raw food diet?" Etc.

This person has dealt with their symptoms far longer than you have. They know what options are best for their body and what options aren't. Their health is their personal business. They will ask you for advice if they want it. They also know when they have to make choices for their emotional health. Maybe some ice cream helps them deal with the shitty reality of being in sick. Maybe a beer helps reduce their pain, or makes it easier to deal with symptoms mentally. Respect that they are coping with the situation in the best way they know how, now, and with the support that they do/don't have. Try to be a source of support. Keep in mind that whatever you have to suggest that they didn't ask for, they have probably already heard it nine million times before. 

An Ally says: "I'm so glad you're engaging in self-care." "You deserve a break from the pain/fatigue/nausea/etc." "Would you like some suggestions? [in response to a "yes"] This is what has worked for me/someone I know." 

An Ally recognizes each body and mind is different. An Ally recognizes the mental, spiritual, and emotional needs that also need to be factored into living with chronic illness. An Ally aids in finding ways a Sick person can get some kind of relief (even if temporary or partial) from their symptoms. An Ally recognizes that medications, therapies, and remedies that may have worked for them or someone they know may not necessarily work for everyone. An Ally gives advice only when asked.

3. Being the Parent. "Are you sure you can take that many classes?" "Are you sure you can do that job?" "Should you really be staying out this late?" 

This person can make their own choices and figure out their own plans. They have figured out ways to do what they wanted in the past, and can figure it out for the future too. They already know better than you the price they will pay for their choices now. Don't take it upon yourself to parent them if that is not something they have indicated they want. If they ask, that's another story, but don't impose that role onto yourself (and the role of the helpless child onto them). No matter how well-intentioned you are, when the help is not requested, it's patronizing. 

An Ally says: "I support you in pursuing your dreams." "I know you can do it." "You can crash at my place if you need to." 

An Ally realizes that abled people do not always make the wisest choice for their bodies because sometimes they want to have social lives or have fun. Sick people are no different. An Ally recognizes that a Sick person has the same right to fun and community. An Ally is willing to take steps to help the Sick person live an enriching life and trusts Sick People will go through their own process of figuring out how much or how little they can take on career- and hobby-wise. 

4. Being the Martyr. "I always have to give you rides everywhere!" "Why do I always have to do the house chores?" "What would you do without me?" 

Caregiving is great when it is just that--giving. Giving with conditions in mind, with guilt-tripping, with threats of withholding the support if the Sick person doesn't do a) b) c) is not true caregiving. At best it's not nice, and at worst it's abusive. It is wielding privilege over the other person and creating an unbalanced power dynamic.

An Ally says: "I'll give you a ride"--without making themselves into the Savior for doing so. An Ally cherishes and values the ways in which a Sick person can contribute to a relationship, even if those ways are less tangible. An Ally recognizes that chores and practical every day living stuff is only one way of giving in a relationship and that a Sick person may have to find other ways to give back (such as through art, emotional support, expressing appreciation). An Ally recognizes that there is a power dynamic and that privilege needs to be carried with care and conscience. An Ally also respects their own boundaries and limits with giving so that resentment does not build up in the relationship.

5. Being the Complainer. The Complainer says: "It's exhausting hanging out with you." "You're always canceling plans last-minute." "I can't do this." 

Being in a caregiver role, or even just being a friend or acquaintance of a Sick person can be a lot to handle. Sometimes it seems like tough stuff and maybe more than you can handle. However remember that while this is hard for you, it's even harder for the Sick person. Imagine what it's like to be in their place.

An Ally says: "I love hanging out with XYZ but it can be exhausting"--to someone else they trust, not the Sick person. An Ally lets other abled people who are able to be emotionally supportive know: "XYZ may or may not show up to the party tonight"--without judgment. An Ally says "I can't do this alone"--to a person who is dealing with less hardship than themselves and seeks support OUTSIDE the relationship with the Sick person. An Ally reaches out to other people to vent and debrief about the hardship of being friends with a Sick person or in a caregiving role.

6. Being the Worshipper. The Worshipper says: "You are such an inspiration!" "Wow, if I were you, I would just kill myself." "You must have a special relationship with God/[insert spiritual figure here]."

A Sick Person does not exist to make you feel warm and fuzzy inside. Your sense of gratitude for your own health and circumstance should not be hinged upon their suffering. There is no correlation between being Sick and any sort of spiritual or religious status. Sick people, liked abled people, run the gamut in terms of religious and spiritual beliefs (or lack thereof). It is important not to view a Sick person's existence in terms of your own, or to impose shallow stereotypes onto Sick people. 

An Ally says: "Sometimes you stay strong, and sometimes you crumble, because you're human." An Ally says: "I respect your feelings about life and death." 

An Ally takes a Sick person's words about faith/spirituality/lack thereof at face value. An Ally gives a Sick person the space to be an individual, and realizes we all individuals yet all interconnected. A Sick person might teach you something, but you might teach them something. And yet, even if you have strong impacts on each other and learn from each other, your life purpose is not reduced to their education. You each live for your own sake first. 

7. The Over-Empathizer. The Over-Empathizer says: "Oh I know what you feel like--I hate when I get the 24-hour flu." "Oh yeah, I'm tired after a long day too!" "I pulled a back muscle once." 

Yes, we have all suffered to some extent. We've all dealt with some degree of sickness or injury. But it is important to remember that being temporarily sick, or in temporary pain, is not the same time as chronic illness or chronic pain. The intent to be compassionate is recognized, but it's important not to diminish a Sick person's experience. It's important to recognize abled privilege. If on the vast majority of days you aren't tired, aren't in pain, etc. then you do not understand being Sick. 

An Ally says: "I can't imagine what it is like to feel nauseous every day." "I have no idea what it feels like to be tired by 11 AM." "You're right, I don't know what it's like." 

An Ally recognizes their abled privilege. An Ally is compassionate but recognizes they do not fully understand. An Ally uses their experiences and draws parallels to try to get an idea, but recognizes that temporary pain/injury/discomfort is only a small taste of what Sick people go through. An Ally recognizes that pain/symptoms/sickness is a Sick person's baseline, their every day.

8. The Victim-Blamer. The Victim-Blamer says: "Why don't you stop focusing on it so much?" "Maybe you were evil in a past life and are dealing with this to fulfill karma." "Maybe if you listened to my advice you'd feel better." 

Different Sick people cope in different ways. Some Sick people find that thinking and talking about it helps. Some Sick people find that it doesn't. Sometimes shitty things happen to perfectly good people, and this is no exception. The underlying reason to victim-blaming is often some attempt at denying privilege or absolving guilt. Realize that the Sick person did not choose illness and you did not choose abledness. It's not their fault they're Sick (even if they made poor health choices at one point, so did a lot of people who never became Sick). And because you didn't choose to be abled, there's nothing to feel guilty about. Feeling guilty helps no one; if you recognize your privilege and feel stuck, think of ways you can use that privilege to practice allyship. 

An Ally says: "If you need someone to vent to, I'm here." "I don't need to insert my opinion into every discussion about chronic illness." "It doesn't matter what made you sick, how can I best be supportive now?" 

An Ally recognizes that Sick people are human and sometimes get overwhelmed by their situation. An Ally recognizes that at times a Sick person may want to vent among other people who understand first-hand what it's like. An Ally also recognizes that we all make mistakes or poor choices and that is a part of being human. An Ally recognizes for example that one person could text and drive and nothing happens, and the next could text and drive and get permanent brain damage. Even if an illness is connected to a poor choice, it still doesn't mean the Sick person deserves the illness.

Other comments that come from a place of privilege:
"Your outfit looks so tacky." Part of being Sick is that often when it comes to getting dressed, comfort comes first. If the only pants you can bear to have touch your skin today are the blue pineapple shorts, then that's what it's going to be. Note: many Sick/Disabled professionals wear the necessary attire and look forward to ripping it off and putting on PJs the second they get home. 

"You can't be an activist sitting at home on your couch. If you really care, you'll come to this protest/ rally/ march." Many Sick/Disabled activists have no other choice. Online activism is just as valid as in-person activism. Activism is about ideas and changing the way we think--it's not about how many hours you spent under the burning sun/ in the cold wind. 

"Your apartment is a mess." Doing chores takes energy that many Sick people don't have. It's not the same as laziness. Laziness is "I could do it if I wanted to, but don't feel like it." Being sick is literally being so drained of energy you wouldn't be able to do it even if you wanted to.

Sick folks, feel free to add! This is a live document--a work in progress--I look forward to having other perspectives added. If you need to see this in ASL or another format, let me know. Contributions in other formats are welcome (if you want to talk about it in PM and have me rephrase, or sign your thoughts to me in TASL, I welcome them.)

Updated based on some comments received.

Thanks so much for the comments! Here are a few additions.
9. Being the Ablesplainer. The Ablesplainer* says: "She was just trying to be nice." "But that's not how I meant it!" "You're too focused on how you feel."
Sick/Disabled people already know how that abled person meant it. We already know that they were just trying to be nice, or kind. Good intentions, good-heart, we get it. We spend our time thinking about "what they meant by that comment" or "their thinking behind that act" all the time. We are forced to think critically about the abled perspective because most people in our life who interact with us interact with us from that perspective.
An Ally says: "That was a dismissive comment to make." "I'm sorry you are frustrated." "That person didn't think about the impact their actions would have on you."
An Ally puts impact before intent. An Ally recognizes that even though someone means well, their words, thoughts, and actions can still have a harmful impact on Sick people. An Ally centers the Sick person's feelings in a discussion about their chronic illness and caregiving. If a Sick person vents about patronizing behavior, an Ally listens to the Sick person and values their feelings. An Ally doesn't make excuses for another abled person's behaviors.
*Ablesplainer (also ablesplanation): the act of an abled person trying to explain Disabled people's experiences to them. It comes from combining the terms abled and 'splaining, constructed parallel to terms like whitesplaining and mansplaining.
10. Being the Newscaster. The Newscaster says: "Oh, they had to get this test done and has that diagnosis and their doctor said this and that." The Newscaster answers all questions about a Sick person's health on the Sick person's behalf without express consent or discernment.
When some is Sick, particularly when they have to go to the hospital or get some kind of treatment, it's natural for people to be concerned. People want to know this Sick person is doing okay. They want to understand what's wrong and offer help in whatever way possible. The Newscaster is usually acting on this intent, but does not realize that they are not respecting the Sick person's boundaries. They also do not realize that they could be causing a lot of drama for the Sick person, particularly if they share sensitive medical information to people who could make harmful judgments based on this information (for example, an employer deciding to lay off an employee after finding out they're likely to be out for awhile.)
An Ally says: "They had this test done"--after the Sick person has given express permission to share this medical information. An Ally says: "He doesn't want to go into detail, but suffice it to say he is doing better." An Ally asks the Sick person how much to share, and who can know what information.
An Ally respects the Sick person's boundaries. An Ally respects the Sick person's choices in how much to disclose about their illness and to whom. An Ally prioritizes the Sick person's privacy over others' curiosity. An Ally understands the risk in sharing medical information and treats this information with the respect and care it deserves.

Monday, July 15, 2013

racism and other sadness of the soul

TW: racism, murder, US legal system, white supremacy, white privilege, and some ableism
So, for those of you following the news/social media/the US anything recently you probably heard about the Trayvon Martin verdict. A lot of people have a lot of feelings about it and I have been reading some stuff and thinking a lot and decided to just put it into a post.
While this issue and the current news and feelings are not about me, as a white person, and don't revolve around me, one of the nice things about having a blog is that it does revolve around me. The blog is about me and how things affect me, not just how things are in the world.
In the past 12 hours something came back into my head which I hadn't thought about it years. Just now when I was trying to remember it, I was surprised that the name popped into my head so easily: Amadou Diallo.
For those who might not remember or who weren't alive/old enough to know, I will give the very brief summary and then link you to the wikipedia page. Amadou Diallo (wikipedia page link) was shot and killed by plain-clothed police on February 4th, 1999. He died at the age of 23 after four cops fired a total of 41 shots (19 of which hit him according to wikipedia) in the Bronx. Diallo was unarmed and outside his apartment building. Another black man at the time was armed and a serial rapist and the officers (remember, plain clothes) approached him. After a series of events (which I am unclear on and will not guess) Diallo pulled out his wallet and the officers who thought it was a gun began to shoot him to death.
The internal NYPD investigation ruled that they acted within policy (i.e. done nothing wrong). The Bronx grand jury indicted them on 2nd-degree murder and reckless endangerment. It was appealed and eventually the four police men were acquitted of all charges. In 2001 the Justice Department announced that it wouldn't charge the officers with a violation of Diallo's civil rights. In 2000 Diallo's mother and stepfather filed a lawsuit against the City of New York and the officers charging gross negligence, wrongful death, and racial profiling and other civil rights violations. They won (a lesser amount than they had filed for, but still a significant amount). Here is a link to some NY Times articles about the issue.
Apart from some of the obvious similarities of an unarmed black man being shot to death and the killer(s) being acquitted there is my own egocentric reason for writing about both of these.
The death of Amadou Diallo is the first significant memory I have of realizing that racism wasn't over. In my sheltered little bubble with my middle class friends of varying racial and ethnic backgrounds, I had been led to believe that we were past all that. I learned about racism and lynching and all of that in a historical sense. I learned that the civil rights movement happened and that Rosa Parks and MLK Jr. destroyed the white supremacists in their non-violent righteous battle and that now we were all equal.
Amadou Diallo's death was a startling wake up call for me. I was old enough to understand what was going on but not old enough to feel like my thoughts mattered or that I could do anything. I was helpless and confused. I had no idea how a wallet could look like a gun, even in a badly lit area. I also thought that cops were good and only hurt bad guys and that this was an isolated incident. I assumed that the men would be brought to justice since they were just bad cops, not representative of what cops were like (because cops protected us, all of us, because I was white and that's what I was raised to believe).
Diallo's death was still in the back of my memory when I was reading about the recent verdict. I have been hesitant to even type out his name and have only been saying "the recent verdict". However, like Diallo's name etched forever into my mind the name of Trayvon Martin should not be erased.
While Diallo's murder is the first one I remember being aware of, it was not the last. Like many people, most of the names of the murdered fade away and are forgotten. Trayvon Martin is the first name to stick since that time when I was a child. The first time I have heard the same name more than once, the first time I have heard people talking about it for more than a few days and angry about it to the point of action.
I am white. I do not try to hide the fact that I am white and when people meet me I am read as being white. I benefit from white privilege constantly and feeling guilty about that does shit to keep black men from being murdered. My guilt and discomfort with my privilege is useless to bring justice to the families of those people being murdered.
Instead of talking about white guilt I'm just going to share some of the articles I've been reading lately and tell you to read them. Go read something else or do something else. Ideas below.
I've heard that doing activism via social media only is "slacktivism" and that is some ableist bullshit. Some of us can't take to the streets. If you can, great, check out this link:
Sign a petition?
Those are usually pretty easy and not super spoon draining (I think it is acessible but if I am wrong please call me out): Petition (there is also a petition through NAACP but I can't seem to find the link at the moment)
Read up on racism?
I read Beverly Tatum my freshman year of college and, like the experience after the murder of Amadou Diallo, I began to completely rethink how I saw race. The whole class it was for but her stuff and her analogy in particular are useful.
A blogger's explanation of Tatum's analogies
If you haven't read Peggy McIntosh's "White Privilege: Unpacking the Invisible Knapsack" (of which there are mulitple lists created for other types of privilege) then I highly recommend reading it.

Read this:
"In the outpourings of grief and anger about the Zimmerman verdict, I’m asking myself and other white people: how are we reflecting on and actively transforming our own personal racism? And our collective racism? This is not about hating ourselves, it’s about loving ourselves so much that we commit to transforming ourselves and our communities. Because white people: we are ALL racist. It is impossible to have grown up in a white supremacy and not have taken on racist beliefs and actions"
Now read the rest of that article: 
He mentions in the article and I'm going to agree that it is worth checking out this presentation.

In other news: “Marissa Alexander of Jacksonville had said the state's "Stand Your Ground" law should apply to her because she was defending herself against her allegedly abusive husband when she fired warning shots inside her home in August 2010. She told police it was to escape a brutal beating by her husband, against whom she had already taken out a protective order.”
And I will let bell hooks finish it off for me since I can't top anything she says:
"White supremacy has taught him that all people of color are threats irrespective of their behavior. Capitalism has taught him that, at all costs, his property can and must be protected. Patriarchy has taught him that his masculinity has to be proved by the willingness to conquer fear through aggression; that it would be unmanly to ask questions before taking action. Mass media then brings us the news of this in a newspeak manner that sounds almost jocular and celebratory, as though no tragedy has happened, as though the sacrifice of a young life was necessary to uphold property values and white patriarchal honor. Viewers are encouraged to feel sympathy for the white male home owner who made a mistake. The fact that this mistake led to the violent death of an innocent young man does not register; the narrative is worded in a manner that encourages viewers to identify with the one who made the mistake by doing what we are led to feel we might all do to 'protect our property at all costs from any sense of perceived threat.' This is what the worship of death looks like.”


Saturday, June 22, 2013

My body falls apart and starts collecting doctors

Content warning: doctors, medical stuff, specialists, pain, medication, brief mention of grad school, and other related topics

I have had chronic muscle (back) and nerve pain (leg) for the past 2 years. When it first started they didn't know what it was. They thought it was a herniated disc so after a few months of trying to get appointments and referrals and find a specialist covered by insurance, I finally had an appointment with someone. She sent me for an X-ray to get a better look at what she assumed was a herniation.

The MRI came back and we realized that it was not in fact a herniation. To totally over simplify, I was born with a spinal cord abnormality that was asymptomatic for most of my life until a few years ago. A few years ago out of nowhere the pain started. They don't know why it started when it did but after it started it only got worse and then began to spread. After we got the MRI and realized it wasn't a herniation (later that day) we saw a neurosurgeon and started the process of preparing for and scheduling surgery.

I might post more about some of this stuff later but basically I had surgery, spent 4 days in the hospital, and then came back home. Shortly after I started the fall semester at school and juggled post-op visits with my neurosurgeon, college workload, starting physical therapy (and going twice a week), finding time to see my partner (at a different school in the same city), and occasionally do things like cook and clean.

More recently: 
As a result of my spinal cord stuff I have to see my neurosurgeon every year for a checkup and any time there is any indication of a change in symptoms I need MRIs. I HATE MRIs! Anyway, recently he found out that the slight herniation I had when I first had an MRI is now a full blown herniated disc. So, he wanted to send me to a spine specialist to make sure that there was nothing to be worried about in terms of that. The spine guy agreed that since there hasn't been any noticeable change in symptoms correlating with the progression of the herniation it most likely hasn't really done much to me. Basically, I was in so much pain before it that if it caused any pain it was less than what I was already in .

I told my dad that I didn't want someone to just put me on narcotics. I know that for a lot of people they are totally necessary and I don't want to imply that those people aren't trying hard enough with other methods or anything. I just personally don't think I could take them regularly and don't want to. I also just don't like being prescribed stuff constantly when there are non-pharmaceutical options available. One of the main reasons I'm resistant to narcotics is that I'm on a number of medications already and I don't like compounding side effects and things. This is all how I personally feel and not AT ALL a judgment or statement about people who use opioid pain relief for their chronic pain. I trust that their decision is what is right for them and my personal decision is my own, just as theirs is. There have been specific times in my life where I have decided that pain meds were necessary but while in nursing school I want to have other options.

A few months ago my dad finally had me see a pain specialist. He reassured me that it would not just be someone trying to prescribe me pain meds without giving me options. At the appointment we discussed a number of things. He said that physical therapy was one of the least invasive options but since it didn't seem to be helping enough for me he wasn't going to force me to go back and do more. There are also non-opioid medications that can help with pain. He mentioned a few other options and said that as a LAST RESORT there is a procedure they can do which involves inserting something into my body for spinal cord stimulation but that he didn't want to try that unless everything else failed.

So, the anti-depressant I have been on for a few years already (Cymbalta) is commonly prescribed to help with neuralgia. Unfortunately, since it obviously wasn't helping much (as far as I know, I was on the Cymbalta years before the pain ever started) so I couldn't be put on Cymbalta for the pain. However, Neurontin (Gabapentin) which is an antiepileptic (i.e. medication for people with epilepsy) is also prescribed for pain. So he started me on that. It seemed to actually be helping. Until I started clinicals.

For those who know what nerve pain is like from personally experience, you understand, and I'm sorry that you do. Those of you who don't, I will try to explain. The types of words most people use to describe nerve pain, medically referred to as "neuralgia", are sharp, shocking,  stabbing, burning, sometimes icepick pain and lots of other really unpleasant words. Everyone has different experiences but the neuromuscular pain in my back that I get, while really bad and sometimes bad enough that I can't walk or get out of bed is still manageable to me. The nerve pain however fogs up my brain and unlike the back pain there is nothing I have found to make it easier at all.

I have done physical therapy, I take over the counter pain medication, I bought a lumbar support brace, and I put a prescription cream pain medication on. I was still in pain for clinicals. The program has also made it clear that if there is anything I can't do in clinicals due to disability, I still fail. That is a whole other post and I'm too upset about it to even try to start talking about it. Anyway, pain is bad and I was seeing the doctor again. 

The other day:
So the other day I had a follow-up appointment at 8:30am with a pain management specialist. 8:30 isn't so early for a lot of people but I'm really not a morning person. Also, I'm in a very rigorous program and I have classes most days starting at 8 or 9 and they go until after 7pm one night and I'm always exhausted. I never have time for work etc. so on my one day a week that I get to sleep later than 8pm having to leave the house at 7:30 is horrible.

We go there and the receptionist isn't even there yet. Finally she arrives and notices we are all there and signs us in. It takes a while and finally I go in to see him. The nurse comes in. In general, I really like nurses. Not surprising since I'm in nursing school. I however really don't like the nurse he works with. She messed up my history when she entered it into the computer last time around. I spelled stuff out for her and everything but she wrote down the wrong medications for which ones I am on (which is super dangerous to have the records wrong) and she wrote down the wrong surgeries for me as well and the wrong years and stuff. So, I wasn't the biggest fan.

Next I got to see a pain fellow. He did lots of things that were super obvious (as someone learning to do a head to toe physical at the moment) were him trying out what his clinical instructor just taught him recently. A lot of the tests were totally unnecessary and it was sort of like a "does this hurt? hmm, not yet. okay, what about this?" game to see what he could do to make it hurt. So yeah, not my favorite game. Then he suggested I get steroid injections. The last time I was there, my actual doctor had said that normally he'd suggest steroid injections to my spine but due to the surgical history and all the other shit going on in that area he didn't think it was the best idea.

HOWEVER! The doctor comes in and basically redoes half the tests and then suggests we do the invasive actual surgery that the time before he had suggested as a LAST RESORT. So yeah, I'm a little frustrated. Also, at this point from sitting around waiting for him all this time and being stressed and stuff I'm in pain and exhausted and have brain fog. Also, I really didn't have the spoons to be like "What are you talking about?!?! You are the person who thought we should leave my spine alone!!! Do you even read your own notes from previous visits?!?!". Also, a while back I actually read a study they did about chronic pain and the type of procedure he was suggesting and they said in the study that it was only indicated for people who had used TENS units for years and no longer found any relief with them. I have only used a TENS (transcutaneous electrical nerve stimulation, basically applying electrodes to your back and stimulating the nerves that way) in physical therapy a few times and really liked it. I mentioned that I was interested in getting a unit for home (you need a prescription and a session with someone to teach you to get insurance coverage and stuff) and he had just said to ask the rehab guy.

So despite the fact that I had been interested in getting a TENS unit and nobody has let me try it yet and a whole other list of things he seemed to forget everything he said and suggest I see a neurosurgeon to discuss whether cutting me open again and implanting stuff inside of me that will be remote control operated is a good idea. If I hadn't been so tired and in pain I might have been able to respond with anything other than wanting to cry. He is increasing my dose of the neurontin so hopefully that will help, but I have managed to avoid the side effect of being exhausted constantly and am worried that the higher dose will make that worse.

I am SOO sick of being sent to a bazillion specialists. To repeating the same information every time. To finding the time and money to go. It is just unbearable. I also don't want to do spinal cord stimulation. I don't want to be cut open, experimented on, or anything else. No. I'm sick of specialists and having specialists refer me to more specialists. This is me putting my foot down. I don't understand why I have to use up all my parents money if I want pain relief without being cut open or medicated. At a certain point you have to evaluate whether being shuffled around and spending all your money is worth the minimal amount of pain relief they might actually provide. So, while I feel like a two year old throwing a temper tantrum, I'm going to keep saying no because it is just not okay to think that people have the time, money, and energy to be sent to specialist after specialist.

My collection: 

So, in case you haven't been counting and to fill you in on the ones I haven't mentioned in this post, lets count all the medical professionals who I have seen over my life. I'm not counting multiples if they are for the same thing (i.e. pediatrician-->internist they aren't counted separately and I have had a bunch of different GYNs).
I am putting *s by people I (was supposed to) have seen in the past year

Before my spine released hell upon my life: 
1.* Internist
2. Gastroenterologist- GERD and IBS (acid reflux and irritable bowel)
3. * Dentist (doesn't really count since I'm way behind in going due to not having time with all my other doctors)
4. *Eye doctor- I've had glasses since I was in 2nd grade or so
5. *GYN- Most likely I have endometriosis (I've switched a bunch of times over the years and think I finally have one I like)
6. Hemotologist- I have a family thing which means I just clot a little slowly and bruise easily (only relevant if I'm having surgery)
7. Breast specialist person- I had a lump removed from my breast when I was in high school
8. Otolaryngologist (aka ENT, ears nose and throat) surgeon- I had my tonsils removed because they were super cryptic and horrible and I had a chronic bacterial infection from them
9. *Psychiatrist- Autism Spectrum ("Disorder"), depression, anxiety, OCD, and some other stuff (I've been seeing him fairly regularly for a few years and he deals with all my meds)

Since the pain started
10. Some type of specialist who had the MRI taken and then freaked out when she saw what was actually wrong (i.e. not a herniated disc)
11.* Neurosurgeon- who operated on me and who does the follow-up; technically the NPs who work with him do a lot of the follow-up but they keep changing
12.* Urologist- I'm writing another post on this experience, but spine stuff makes certain urological things problematic
13.*Physical therapist- I started up a few months after surgery with them (PT and PTA) to work on my back and leg stuff, on and off for about a year and a half
14.*Women's Health PT- (in the other post explained) for pelvic floor stuff, still going there (have seen 3 different people there)
15.* Pain specialist- to try to make the pain manageable
16. *Spine specialist- the guy my neurosurgeon sent me to in order to make sure the herniated disc was okay
17. * Rehab doctor- pain specialist referred me to him, supposed to get acupuncture to help with pain but it is so incredibly expensive (since acupuncture isn't covered by insurance) that I can't bring myself to do it. I might wind up going because my dad wants me to try it but I know that my parents can't afford it and I'm so tired of how much I cost to keep "healthy"
18. *The new neurosurgeon the pain specialist referred me to in order to evaluate the possibility of the spinal cord stimulator

Sunday, June 9, 2013

Epilepsy Education

I know very little about epilepsy and seizures. Growing up the little I knew came from the media like the rest of the world I suppose. I thought seizures were things people got and they shook and vomited and you had to keep them from swallowing their tongue or some weird shit like that.

I never knew anyone with epilepsy growing up (that I knew of at least). The first time anyone I knew had a seizure was when my aunt had one. She had more than one and I didn't understand it and I forget how my parents tried to explain it, obviously not the memorable part (she wound up having brain cancer and died and I'm not going to get into that).

I learned that certain things could trigger seizures from their warning labels: video/computer games, strobe lights, etc. That was all I knew. I figured it must really suck being triggered to have seizures by all that stuff. I don't remember if I understood what epilepsy was even or just thought people magically got seizures from video games.

Anyway. I have since encountered the wonderful Neurodivergent K. Their frustration with the inaccessibility of the world has made me more aware of epilepsy and more knowledgeable about it. I still know very little. I still don't really understand it. I will presumably learn a lot more in nursing school, but still not enough. So, Neurodivergent K has offered to help me out and fill in the blanks of my epilepsy knowledge and to help me review some of the information I'm receiving throughout my education from the perspective of somebody who actually gets what epilepsy is like.

I hope to have many more posts on epilepsy education but for now I have a handful of links to their blog posts to share and then the first textbook critique of the semester.

Partial WHAT?
What epilepsy is
Anticonvulsants & me
First Responders & Me
My seizure first aid

Textbook Game!
So, the image below was taken from Taylor's Clinical Nursing Skills: A Nursing Process Approach (3rd edition) by Pamela Lynn. It says that this is for a patient known to have seizures and how to protect them. 

Neurodivergent K's response: That's standard for people with tonic clonic seizures. For people with partial complex, it could be anything from "eh whatever" to "they trip on the guard rail because they go for a walk", which is all kinds of exciting. The persistant ignoring of partial seizures baffles me, since they're by far the most common.

So, I was curious why this seemed to be only directed at tonic clonic seizures. I thought maybe it had previously specified that the "seizures" they refer to here are tonic clonic and that those were the dangerous ones to be addressed blah blah. So, since I have ebooks I did searches within them.

Total instances in the textbook of the following phrases:
partial complex seizure: 0
partial seizure: 0
tonic clonic: 0
seizure: 63
epilepsy: 6

Hmmm. I hope I will be learning something about epilepsy in nursing school...otherwise, Neurodivergent K supplementary education!!

Might update this post later or post more fun epilepsy related things. 

Monday, June 3, 2013

What's for dinner? Fat shaming with a side of ableism

The above article. Feel free to read it on your own before I comment on it or don't since I will cover the basics. 

Below is the image which is at the top of the page where the article is and directly below that image will be visual descriptions of it. 
NYU Prof to Obese PhD Applicants: Thanks, But No Fatties Allowed

[visual description]
The article has a rectangle above it in a blue color (I think? or it might be purple which would make more sense since the NYU color is purple. Within that rectangle are 2 main things. 
1) A black outline of a scale (the kind used at the doctor which is not digital) with a white NYU logo of a torch thing standing on it 
2) The tweet of Geoffrey Miller @matingmind with a photo presumably Geoffrey Miller next to his name [photo of a light skinned male presenting person with glasses and dark hair]. There is of course the little twitter icon in the right top corner of the tweet box thing. 
The text reads: "Dear obese PhD applicants: if you didn't have the willpower to stop eating carbs, you won't have the willpower to do a dissertation #truth" 
**As with any visual description I do or other accessibility attempt please feel free to let me know if it is incomplete or otherwise not fully accessible**

The article itself is written by Laura Beck who then tells us that Miller is an evolutionary psychologist and lecturer at NYU. She mocks his lack of willpower for not being able to hold back from sending this ill conceived text out into the world of the interwebs. After "the backlash" he deleted the tweet and then tweeted :
My sincere apologies to all for that idiotic, impulsive, and badly judged tweet. It does not reflect my true views, values, or standards.
— Geoffrey Miller (@matingmind) June 3, 2013

Obviously my previous tweet does not represent the selection policies of any university, or my own selection criteria.
— Geoffrey Miller (@matingmind) June 3, 2013

Yeah, wow. So, he refers to himself as "idiotic" and "impulsive" but apparently he has the kind of impulsivity that still allows for excellent willpower, proven by his not being fat. 

The author continues:
The cruelty and inaccuracy of statements like Millers can't be emphasized enough, especially considering that many fat people read his tweet and it reinforced the societal message that our weight is our worth — not just physically, but mentally, as well.
Most depressing part? This man teaches a postgraduate level Human Emotions course. 
So, I am too much wanting to crush him by sitting on him right now to fully articulate what I want to say. However, a few things and then I might return to write about this later when I'm less enraged.
This is a psychologist who teaches a class on emotion. People wonder why some of us don't like psychologists?! Sort of like how Autistics lack empathy but psychologists calling Autistics void of emotion is totally empathetic. 

The idea that people are fat because they don't have "willpower" is hurtful, wrong, ableist, classist, and all other kinds of shitty. Not to mention that "willpower" is often related to things like "impulsivity". He obviously has the latter but magically it doesn't affect the former for him. However, being "impulsive" is often something that people who are ADHD and/or Autistic (and lots of other stuff I'm sure I just know those best) often struggle with. Not in the "oh no, poor baby lets pity them" struggle in a suffer way. I just mean that many of us have compulsions and can be overly impulsive in being able to hold back. I have a lot of trouble with getting myself to do things and it could be considered lack of "willpower". Often, it is just lack of spoons for me. These are all complicated things and my brain hurts but anyway...

To sum up important things.
1) This guy is horrible and makes me sad and want to give up on the entire field of psychology 
2) Being fat does NOT mean lack of willpower
3) We REALLY need to stop using "lack of willpower" as an insult. While impulsivity and lack of willpower are not exactly the same, the whole idea of psychological fortitude and mind over body because the mind can conquer all and do anything it wants to is super harmful and really hurts many of us psychologically and our self-esteem. 

Sunday, June 2, 2013

Note about writing style

As I said in another post:
In general, I don't really want to edit myself. I prefer to be able to use punctuation and words as they happen and just leave them as is. So, don't correct or comment on grammar, spelling, etc because I know it is mostly wrong and I'm already self-conscious about it but I want to be able to just write without stress (for once). I'm not wasting precious spoons on that. If however something is unclear because of how it is written, feel free to ask for clarification! Just don't tell me that I used a semicolon wrong or used affect instead of effect please.

Sometimes my writing style is strange or awkward or super run-ony and yes, I make up words. I just type exactly as I speak and just like in a conversation you can ask for clarification if you don't understand. I have a lot of anxiety and stress around writing and it is a big issue for me. I take forever to write 2 page response papers for school and panic about them. This blog is about me letting my thoughts out. 'Talking' them out helps me process and reflect. Obsessing over how I write just becomes time consuming, spoon draining, and unpleasant. 

So, if you comment on writing style problems, grammar, spelling etc for any reason other than to get clarification because you honestly are having trouble following/understanding, I will just refer you back here so please don't.  

Saturday, June 1, 2013

Welcome to Nursing School

Wow. So I had really meant to start blogging sooner and now I have too much to blog about all at once!

I had orientation for nursing school already and I have a lot of thoughts on that among other things and my mind is doing its usual non-linear pattern of thinking so I'm having trouble putting together all my thoughts on the current pieces of my life.

In general, I don't really want to edit myself. Like the above paragraph. I prefer to be able to use punctuation and words as they happen and just leave them as is. So, don't correct or comment on grammar, spelling, etc because I know it is mostly wrong and I'm already self-conscious about it but I want to be able to just write without stress (for once). I'm not wasting precious spoons on that. If however something is unclear because of how it is written, feel free to ask for clarification! Just don't tell me that I used a semicolon wrong or used affect instead of effect please.

So, orientation!!!

There were lots and lots of people. We were all put in the same room together for most of it. I had to figure out where to sit and lots of other things I hate doing. Lots of difficult social aspects of graduation!!

My default is to sit in a back corner because I can't deal with paying attention and sitting and listening when there is stuff going on behind me (something I'm going to have to deal with in the hospital). I tend to constantly look to see what the noises are etc. Also other issues and it is just one of the things I do and really appreciate when I'm in unfamiliar and overwhelming settings.

So, of course what happened was that there were no seats in the area I wanted. I instead sat about 3 or 4 rows from the back, all the way on the seat closest to the wall/aisle. First issue with this was that every time someone went to the bathroom I had to get up and maneuver my stuff around and it was awkward and inconvenient and often involved human touching which I don't like with strangers. Second issue. A row or two behind me there was a group of girls who talked the ENTIRE time. I couldn't focus on a lot of the presentations because they were talking. Not the type of talking where they whisper something every few minutes or comment on the presentation. They basically just sat there throughout every presentation having unrelated conversations with each other loudly enough that we could all clearly understand the whole conversation. It made it really difficult to follow and was upsetting me and I didn't know how to say something to them without being mean because I was getting upset. So that was fun (sarcasm).

One of the other big auditorium style presentations decided to do an "icebreaker". This was the same one I think that they did at accepted applicants visiting day whatever it was called. Basically "stand up if...". So, they had everyone standup who was an older sibling, then younger, etc. The idea being a way to ask basic not super personal information about each other and look around and see people who have meaningless things in common with you. For starters, obviously this is a problem because lots of people can't physically stand-up. However, generally speaking those folks aren't allowed into a lot of nursing programs anyway because of "essential qualifications" (I'm writing a post about "essential qualifications" but I'm not done yet, so I will try to remember to put the link to it back here when I finish it). On top of that, those of us with "invisible" physical disabilities are expected to do these things which we shouldn't. I am technically physically capable of standing up and sitting back down repeatedly. However, it is a bad idea and I will hurt myself. Just like I am capable of walking up a few flights of stairs but when I couldn't find the elevator the other day and was walking with a group of people and just went up the stairs with them, I was in pain for a few hours. I hate this type of shit.

The entire thing was way too loud. There were too many people. I had to leave one of the socializing parts of the week and hide in the bathroom to hyperventilate. I couldn't take my antianxiety meds though because then I couldn't take my adderall and without my adderall I can't focus on the presentations and stuff. A lot of it involved too much social stuff for me to understand or be able to deal with.

I lost my phone this past week so I didn't have it for part of orientation (I got it back). Apparently our scrubs are made out of a not comfy material. So unlike every single other pair of scrubs I have ever felt which I would be fine wearing, our scrubs are probably going to bother me. I bought a pair of used scrubs which seem to be a different fabric so I might just wear those and then wash the brand new ones a bunch of times in the laundry and see if it helps. I think if I tried to get an accommodation to wear a different scrub fabric they would throw a fit.

I made some friends, I think. I managed to finally at the very end of the first day actually have a conversation with another incoming student for more than 10 seconds. I don't know if I made friends. You know why? Because the world doesn't work the way that my Sims game does. Sometimes, I wish it did. For those of you who haven't played Sims this is what I mean. When you make two players interact, they have choices on how to interact. They can do stuff like be nice to each other. If they do friendly things, it makes the friend meter go up between them. Once it hits the top they level up in relationship status and you can move from stranger through a number of other statuses to best friends. There are also ways to interact romantically or in mean ways and that can make them become romantically involved to the point of getting married or to be nemeses. Basically, in the game the more you are nice to a person the more you are friends and there are clearly defined linear guidelines for "acquaintances" and "friends" "good friends" etc. In real life, it isn't like that. I have no idea how to not scare people away who I want to be friends with. I don't know at what point I can say "oh, yeah, my friend Bob". It just makes it even harder and adds another layer to this stuff. Especially when you throw in gender and things like that. *sigh*

The other amusing thing was that they did FIT testing for me. For those who don't know what that is basically they test your size for these protective masks. Part of the testing they put you in this big hood and they spray this stuff in a hole and tell you to stick out your tongue and tell them after how many pumps you smell or taste anything. The lady hadn't even finished the first pump when I was disgusted by the bitter taste of it. Yeah. Luckily I fit one of the standard sizes so I don't need a special one.

So, that is the basic and boring summary of how orientation went. Stay tuned!

Self-Accommodation and my Emergency/First Aid Kit

So, a few months ago I started writing this post and just got around to finishing it and posting it now. Since then, I read a similar post: Yes, That Too: Accommodating Ourselves which you should also check out, it is great, and it covers a lot of the same stuff. The main difference is that their post is mostly social related accommodations of sensory stuff and I add some the biomedical type accommodations and accommodation needs. 

Everyone has their own personal things they need, but these are mine. 

TW: Minimal blood and skin picking 

I bring a basic First Aid Kit with me basically everywhere. Days like today it is both essential and still incomplete. I also carry what I used to call my “aspie kit” (see Lydia Brown’s post as to why I stopped calling myself an aspie (The Problem with Aspergers ) and now generally just call my “emergency kit” with me everywhere. Both a first aid kit and an “emergency kit” can be essential for many of us and can be either one or two.
My “emergency kit” is usually kept in a regular inconspicuous pencil case. 
My first aid kit at the moment is in a Ziploc bag at the bottom of my backpack. I haven’t needed it in a while, I’ve been pretty careful and when I haven’t I’ve usually been able to bandage at home sufficiently.

Emergency Kit:
  • Bag/Case: I keep mine in simple pencil cases (the big kind with 2 zipper pockets, not the skinnier ones). I like that because I can pack it in my backpack and it comes with me everywhere. I don’t have to think about it and it keeps me calm knowing. When I have to go somewhere nicer, I can usually fit it into a purse type thing. If it is a really nice thing I can take some of the things out (or extras of those things) based on the type of event. If someone is more femme than I am I’m sure you can use a nice clutch for this kit or some type of make-up bag which can be put in a purse. One of the important things is that I like to keep it together and be able to just pack it in the bag along with my phone, wallet, water bottle, and whatever else I’m bringing and not have to constantly be thinking “what if I need X!” and then running around frantically trying to account for every scenario.
  •  Ear plugs: I buy reusable ones and keep them in their handy case and bring them with me almost anywhere just in case. Disposable ones are okay but not worth the money or environmental waste in my opinion. 
  • Tissues: for obvious purposes as well as for when I pick at my skin and it bleeds too much (their usual use with me)  
  • Chapstick of some kind:  I keep at least one with me all times if possible. In the winter especially. I lick my lips constantly in the winter and get HORRIBLE chapped lips which crack and bleed and I pick at them and they get infected and it is a bad thing. So, I usually carry a mini (e.g. 7g) thing of Vaseline with me and a small lip thing (that looks a little more normal is still for chapped lips and not a lip gloss) as well.
  •  A stim toy: obviously stim toys are the best. I often carry more than one but I try to keep a small one at least in this so that I can bring it. I have a mini slinky and a magnetic bracelet usually. Magnetic beaded bracelets (that look like these, but ignore the rest of the website) are a wonderful way to bring a stim toy to something when you need to look like a grown-up!
  • Meds: Any meds that I need to take either as needed or a few times throughout the day I keep extras of here. Specifically, my anti-anxiety meds and at least one type of painkiller are a must for me. I usually keep my inhaler here in case of asthma problems too
Miscellaneous Other: 
  • Aromatherapy: I personally really like the Bath & Body Works “Stress Relief Instant Aromatherapy” roll-on  (no produce placement or endorsement, I bought it and I like it and I didn’t compare to any other products). It is small and smells nice and does help calm me down a little bit. This is me as an Autistic disabled person, not as a nurse suggesting this since as a nurse I know nothing about aromatherapy's medical benefits etc.
  • Auditory reliefI keep my headphones and ipod outside of the kit because I use them all the time but headphones and some type of music player are definitely great kits to bring along everywhere  
  • Edible: I usually try to keep some type of protein/energy bar in there just in case I really need a snack and I’m getting grumpy and stuff. I also personally keep tea in mine sometimes. I am particular about what kinds of tea I like and find that knowing I have my own is useful.
  •  Menstruation stuff: for those who menstruate having an extra pad/tampon/menstrual cup can be great to keep with this stuff so you know you always have one on you. 
  • I often also keep one or two first aid items with me in this kit in case I don't bring the full travel first aid with me everywhere 
First Aid Kit (travel- I have a massive first aid kid that I keep at home)
  • Medical tape (paper): also useful sometimes for fixing broken jewelry, pretending it is scotch tape, and a whole bunch of other things. I buy the paper kind because it is less irritating on the skin and just more comfortable for me. I used to buy other kinds of tape and then I’d wind up getting a rash from it or just itching at it and then I’d have to get a bigger gauze pad to cover that irritation on top of the actual injury and it would just be a disaster.
  • Gauze Pads (individually wrapped): I usually keep at least one large (~4x4 inches) non-stick gauze pad in there just in case there is some bigger issue. Also, sometimes I have to re-bandage an injury that needs something that big. It can also be good as a sterile pad to wipe a small but bloody/messy injury or wash it off.  
  • Antibiotic ointment: neosporin or something like that from the store. Sometimes you can get free samples of individual little packages of them from medical places or store purchased first aid kits. 
  • Band-Aids (regular and dot for me): I only buy the sensitive skin ones (see above for tape). I get the regular basic size and the dot size and bring a few of each in my travel kit. The dot ones not everybody needs but for me they are especially awesome because as I have mentioned I am a skin picker and the dot bandages tend to be the perfect size for a lot of the tiny little spots I need to cover from that and they are less conspicuous than regular sized and stay on weird surfaces better.
  • Alcohol pads: I bring a bunch of these with me. They are good for a whole range of things not just first aid.


The Spoon Theory written by Christine Miserandino 
The above link will take you to the page with the article. There is a link on that page which lets you download a PDF instead. It explains the spoon theory.

This theory has been taken by many of us disabled folks and turned into cultural jargon. Being in a crip friendly place I will often hear a friend talk about spoons and it is just understood. It is easier than explaining mental, physical, emotional, and other types of energy and expenditure and how they apply to sick/disabled/crip/etc folks.

Read it. Enjoy it. Now you know what I mean when I say spoons.

Thursday, March 28, 2013

a passover story

I had a lot of thoughts over the first few days of Passover that I wanted to share.

My story
The Passover seder I was at did a thing where people spoke as objects or people from the Passover story. For example, someone speaking as the frog leader from the plague of the frogs about what it was like to be a frog in that story. 

One woman chose to be Moses/Moshe/משה. She began to speak and then quickly made some statement (I forgot what it was) and began speaking with a fake lisp. It was not only a fake lisp, but a very imprecise one that essentially combined multiple different speech problems into one. I was really upset by this and found it HUGELY offensive for a number of reasons. 
1) Emotionally as someone with a former speech impairment
2) Intellectually/academically as someone who reads about disability studies stuff
3) As a disability advocate

(1) I was in speech therapy for 5 years when I was younger and still can’t listen to my voice recorded because I hate how my own voice sounds. For years after I stopped speech therapy I wouldn’t speak to strangers if I could help it and would use my family to interpret for me. In case the image isn’t clear enough, when I was in high school and on a date with someone I realized it was one of the first times I ordered for myself at a restaurant. So, I am obviously very sensitive about these things. 

(2) Through my disability studies reading am aware of the more academic issues with such an act. Tobin Siebers in his book Disability Theory discusses the topic of disability masquerade and specifically “disability drag”. He talks about the problems with non-disabled people pretending or acting like they have a disability. This was in the context of movies and other media, but I think the act is still problematic on a much smaller stage.

(3) The family hosting that seder, have a daughter with disabilities. I don’t know if she was previously in speech therapy. I know that her “non-disabled” sibling (who is my friend) was in speech therapy and was also offended by it (we spoke when we left the room quietly so we wouldn’t have to listen to all of it). That sibling was offended in similar ways to the #1 reason I listed above as well as from being an aware person of disability stuff. The daughter with disabilities I don’t know well. However, I do know that having multiple disabilities makes me more aware of these issues and more sensitive and even when the disability being mentioned isn’t mine, I’m still way more sensitive. I have no idea if she noticed it, saw it as wrong, or was offended by it. 

My thoughts about this story
These types of situations are hard to navigate. There were a lot of people and there isn’t an easy way to stop someone in the middle and chastise them without it being really rude, embarrassing, and NOT educational. I don’t blame them or fault them. I however know that if my parents are silent when something about another disability is mentioned in a way I’m offended by, I feel hurt. As a disability advocate, I worry about things like this happening which aren’t “such a big deal” in the scheme of things but are really missed opportunities for a wonderful teaching moment and a really good excuse to remind your daughter, or remind people in general that respecting people with disabilities is important. 

My friend spoke about it after as a missed teaching moment. I think that is really one of the things that bothers me most. Some of the woman’s points would have been wonderful to listen to (e.g. ‘why would God choose someone like me who has trouble speaking and expressing himself to be a leader?’) if I could have listened. Moses and his speech problems is a wonderful disability teaching moment and an empowering discussion. So, I will take this opportunity to share a few thoughts about it. 

(Note: I am discussing this story, the characters, and my own things about it from a literary perspective of viewing the hagaddah and the Passover narrative as a disability related story. I don’t want to get into religion or religious discussions or anything. “God” is being used as a literary character who makes choices and beyond that I have no interest in getting into. My own religious beliefs beyond being a Jew are irrelevant.)

Teaching Moment
God chooses Moses to lead the Jewish people. He chooses him to essentially go and advocate for the Jewish people before Pharaoh. Choosing a leader and an advocate who has trouble speaking is a strange choice. God appoints Aaron as an interpreter for Moses. Despite the fact that Aaron is supposedly speaking for Moses, he is still a secondary character. There is no question that Moses is the leader and that he got the Jews out of Egypt. Moses is the focus and the hero and his words are viewed as such. Aaron is a character as Moses’ brother and as an interpreter, but his role as an interpreter is viewed as just that; interpreting what Moses wants to say into words that others can more easily understand. 

I don’t have any wonderful insights to share. I just want to bring this idea up. That Moses seems to be the first person in history to use AAC (stands for Augmentative and Alternative Communication, wikipedia calls it an "umbrella term that encompasses the communication methods used to supplement or replace speech or writing") and have his words viewed as his own. Not only that, but despite his needing an interpreter, he was still viewed as capable of advocating for others (and others who had very different childhoods than his own). 

On that note, I hope those of you celebrating Passover have a good one and those of you who aren’t celebrating/aren’t Jewish have a good week anyway. I don’t usually look to the bible or religion for things about disability (as they often depress me) but when I’m smacked on the head with a disability scenario which can be viewed positively I think sometimes it is good to share. It would be nice if someone who is better with words than I am wanted to interpret my ideas and write something actually nice about this topic. 

Thursday, March 21, 2013


I was discussing this with a few friends the other day. Autistic pain and neurotypical pain, and well, everyone's pain, is not the same. The other day I was told something would be VERY painful, but it wasn't. It was however VERY unpleasant and INTENSE, but not really too painful. These are different sensations and they make a BIG difference to me in how I prepare mentally for them. 

At the physical therapist or the doctor, I'm asked to rate my pain on a scale of 0 (or 1) to 10. Sometimes, it is merely a binary- pain? yes or no. 

A lot of the time, the questions have to do with what KIND of pain. 
For example, WebMD asks; Q: How would you describe your headache? The possible options to this question are: 
1) sharp or stabbing
2) dull or achy
3) burning or stinging
4) pressure or fullness
5) throbbing
6) none of the above 

I'm often at physical therapy and can't describe the sensations. It is tenderness and discomfort, but not exactly pain. There are just so many ways we can feel things, so many unpleasant ways, and so few words we know how to use for it. The types of analogies we use are also lacking. 

Then, when you get to autistic descriptions of pain/discomfort to NTs it is sometimes just totally baffling and impossible to communicate. 

I read this excerpt from the wonderful magical and highly highly acclaimed (by me) anthology, Loud Hands: Autistic People Speaking which pointed to some of this.  
"When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed"  (Bascom, Julia. "Quiet Hands." 119). 
Certain things HURT us (autistics) that aren't physiologically supposed to be related to pain. It is very complicated and confusing and there is just a lack of terminology for talking about how our bodies feel. I have noticed through physical therapy that in general I don't know the right words for the right feelings. I know good or bad and painful or itchy but I don't really know how to explain to a non-autistic what it feels like, really FEELS like to sit still for too long without stimming. Or to explain what it feels like to have to eat the wrong kind of foods. 

I think it would be great to have some way of comparing feelings and sensations that we feel and understand and know about ourselves to the more traditional and medical and NT ideas about sensation. 

I don't have ideas. Just thoughts.