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). 

Onwards! 
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. 

Pain

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. 

Why I want to do what I want to do

[trigger warnings for all of the mentioned articles about ableism, abuse, neglect, and general lack of respect for the lives of people with disabilities]

Most people do not understand why I would want to focus on people with disabilities in a medical practice. 

The LGBTQ part some people understand or just realize they totally don't understand and let it go. However, most people assume that the medical realm, doctor's offices, hospitals, etc is THE place that caters to people with disabilities. So why on earth would you need a special place?!

Well, Doctors Turning Away Patients With Disabilities - Disability Scoop Just because a place is medical in nature, does not make it accessible. 

And then you get articles like this: Doctors put lower value on lives of the disabled, study finds - Telegraph

Of course there are also many many articles about this case "Woman claims hospital restrained autistic son, left him to suffer" [Trigger warnings for: medical neglect, abuse, graphic images, and restraints]. 

And of course not being allowed organs: Disability Bias Clouding Organ Transplants, Report Finds

I could of course go on and on and on for hours. I don't want to though. I can't. It is too upsetting. It is simply unacceptable. 

I should not have to do anything special to be a medical provider for people with disabilities. It should be the norm. But it isn't. It makes me furious. However, being furious doesn't do anything if it doesn't lead to anything. So, here I am. Overworking myself with prerequisites so that I can start nursing school in a few months. Hopefully, one day I can try to make a difference for at least some people. I would like to not have to. But, until then. I will just be furious and try to make something worthwhile out of it. 

I'm sick of the doctor

I'm sick of the pills. I'm sick of feeling like a chemistry experiment.
I don't want to make anyone feel like that. Ever. 

But chances are I will. 

I'm not sure how to deal with that. 

respecting patients while utilizing and appreciating the knowledge of caregivers

Summary:

• I want to work with patients with disabilities
• Some of those patients I'm sure will be non-verbal
• This does not mean that I don't want to 'hear' what they have to say
• It just means that the process is more difficult
• How do I best do this and while respecting the person and their agency but without sacrificing their level of care? 

Long fully explained version:


So, in a few months I start an accelerated nursing program to eventually get a masters (probably a doctorate as well) in family nursing practice. One of my goals as a future healthcare practitioner is to be as disability inclusive as possible.

I have been thinking about these issues a lot recently and brainstorming what sorts of things are involved in making that a reality and what things will be practically necessary to plan for. One of the big things that I am embarrassingly ignorant about is methods of communication that differ from my own.

Specifically, I have been thinking a lot about the issue of consent and the ways that I personally think consent and discussions about medical practices and healthcare needs to be much more of a conversation with patients. I really want to be able to engage with my patients in actual conversations about what their goals are in care and what their main concerns are as well as make it an environment where questions are encouraged.

Basically, I have been thinking about how to handle this issue of consent and patient involvement in their medical decisions when applied to patients who have communication styles, methods, and amounts different than my own or others I'm more accustomed to.

I would like to respect my patients as individual human beings with thoughts about their own lives and address them as such. In thinking about what I knew on the topic of respecting people in these situations one of the big things that I always hear is to always direct questions and look at the person and not their caregiver. This makes sense to me, but as a frequent patient (who is Autistic) and as a future medical provider, I think that applying this too rigorously limits the level of care I can provide.

As someone who has dealt with a lot of medical stuff personally I have often found it exhausting to repeat the same stories and lists over and over again. I also sometimes get overwhelmed and am less comfortable talking to strangers etc. So, sometimes I find it really a lot easier to have my mom or other caregiver type person with me answer the majority of questions and then I can correct/add as needed. Also, apart from me, these are the people who are the experts on me.

The burden of doing all the work dealing with medical situations is often too much for me alone and needs to be shared, I think this is probably true for Autistics who communicate differently than I do. Also, I think that good caregivers/support people should be utilized for their information about the person's basic medical information as well as how they can best communicate and be comfortable around me. I want to acknowledge and take advantage of the wealth of information  and support that loved ones can provide without minimizing the respect and agency that the patient deserves.

Additionally, I think that effective health interventions with patients require a support network. Not that I can think of off the top of my head health interventions, but even for example a complex schedule for taking a certain medication. It is hard to remember all the instructions and if you write it down then you can lose the paper etc. Then you have to remember to get the paper and figure out how to implement that schedule and incorporate it into your life. So, for people who utilize other people in their life for daily activities, scheduling is something they need to be involved in discussing to get the person to take the meds.

I know that I have a LOT of trouble incorporating new physical therapy activities into my schedule. I don't have good supports for helping me with managing my schedule and routine. So often I just forget to do my physical therapy. Then again, in the types of situations when doctors don't fully explain things to me and I only get simple instructions for a referral or procedure and it wasn't explain to me, it is really frustrating. So I want people to be part of all these conversations but involve the people who should be there. Not to mention that all of this can be totally overwhelming and WAY too much to deal with at a visit with your medical provider and expecting too much from a patient and overloading them isn't good either.


**Sooo, yeah. That was really rambling as I'm sure you will all (if anyone is reading) get used to. I think most of my main points are sort of clear. I would love responses/comments/suggestions either in the comments section or via email (cripradicalnursing@gmail.com). I would love to hear from autistics on what their preferences are in these situations and how they navigate them as well as from parents/caregivers about how they navigate these situations and advocate for their loved one and ensure that it is with the consent of the person. **

Welcome

Hello whoever is reading this,

I wanted to welcome you to my blog. I should be doing homework right now but I have to take a break to reduce the massive level of anxiety I'm feeling.

I started this blog because I realized there is a lot of pontificating and venting I will need to be doing (even more than usual) once I start graduate school. I was accepted to a joint program to get certified as an NP and get an MPH. That means, I will be doing an accelerated program to do a Bachelors of Science in nursing (for people with a BA in another field) which takes about a year and then the same program I would be continuing to get my Masters in nursing. Then during this there is time set aside for me to get a masters of public health as well (all in the same university). It is about 3.5 years for all of it if I just do those programs. If I continue and get a DNP (doctorate of nursing practice, the clinical doctorate degree for nurses) that would add another 2 years.

I'm a feminist, vegetarian, queer, pansexual, cisgendered, Jewish, white, Autistic, physically disabled (yet not visibly so), geeky female. I hate ableism, racism, transphobia, sexism, and all that other stuff. I however also really love biomedical sciences and public health. Being part of the medical industrial complex while still using phrases like the medical industrial complex is really difficult and requires a certain amount of cognitive dissonance. Additionally, being white, passable as straight, passable as able-bodied, and cisgendered means that there is a lot of privilege I have in that institution which I'm really uncomfortable with given the communities I want to work with and care about. I want to work with the LGBTQ communities and disabled communities primarily. I essentially want to work with those people who are told that they are too abnormal for doctors to understand how to treat them and that it isn't worth their time to try. I want to take that time.

Already, reading the list of competency requirements I'm curling up inside myself to compartmentalize and find a way to deal with who I am and who I must be in order to succeed in graduate school.

So, to anybody reading this...I hope your night is less stressful than mine and I will speak to you again soon.

-Me