Uncategorized

The Case for Identity-first

[Note: this post is specifically in regard to the autism community. Many other disabilities still prefer person-first. Remember that some people on the spectrum may actually prefer person-first, and it’s always nice to ask. However, general consensus in the autism community is identity-first and is the default.]

“You are required to use person-first in this class. Otherwise, it will affect your grade.”

 

I am autistic, not a person with autism.

I don’t “live with” or “suffer from” autism.

Autism isn’t a roommate that eats all the leftovers from my fridge, or a cursed plague rained down upon me from the sky. It’s not a death sentence, a condemnation to a life of loneliness and disastrous consequences.

The only thing I’m “suffering from” is the lack of acceptance and respect.

Autistic isn’t a bad word.

It’s an operating system, a lens from which I experience the world around me. It’s how I enjoy each moment, embracing my own existence in a way that many others do not. It’s not a disease, no matter what anyone says.

Neurodiversity is necessary in this world, and autistic people are not less for being themselves. All of us have value – the happy flappers, those who use AAC, those of us who can hardly remember to feed ourselves half the time (shout out to my schedule chart and phone reminders). Our lives might look a little different than yours, but that doesn’t mean it’s any less meaningful. Being autistic means I can be lost in the same musical pattern for hours. It means feeling joy so intensely that all I can do is flap my hands because the excitement over seeing a butterfly is just far too much to contain inside.

Sure, being autistic means shirt tags that feel like cacti pricks. It means intense fluorescent lighting, a rush of voices in the room that leaves your head swimming. The constant desire to know where my limbs are for grounding, the need for a human guidebook. It means feeling like an alien in a world that isn’t quite suited for my functioning needs. It means that I’m not really supposed to live on my own, that friends and others check on me regularly to make sure that I’m eating and looking after myself.

That doesn’t make me any less. Instead, it makes up my existence. Living in itself is full of positives and negatives; being autistic is the same.

We exist in our own way, and we deserve to exist.

If you need person-first language to remind you that I am a living, breathing human-being, we have an issue.  By enforcing the use of person-first, you immediately make the assumption that my disability makes me less – and something that you have to separate me from in order to have any worth in your eyes. You imply that I am broken, but you’ll try to make up for it by calling me a person first. At the same time, you completely contradict my entire identity and tell me that my voice does not matter.

Working with children with disabilities in the future, my kids will not learn this.

My future kids are going to be loved. They’re going to learn that their disabilities make them unique, a beautiful boost to the natural diversity of humanity. They will learn that they are full of value – not despite their disabilities – but with the inclusion of them. I will teach them that their differences are needed in the world. In my home, office, or wherever I work some day, they will never need to feel ashamed of their existence.

In the community center I volunteer in, I take the same stance. Every single autistic child that enters that building is a precious soul who needs to be cared for and shown how important they truly are. The same applies for teens and adults, too. They are facing obstacles at every point of their lives, and we are all surviving in a world that doesn’t really take us into consideration.

In the meantime, I still have things to do.

It would appear that my opinion as a disabled person is not always valued – especially in this area of study. It’s ironic how something so nice-sounding is actually incredibly dehumanizing. I have to be honest, the requirement made me feel medicalized and as if my community doesn’t actually matter.

It makes me feel like only the “professionals” get a say, instead of the people I am meant to serve in the future. I’m struggling through college for a reason: to help future disabled children and adults to take pride in who they are and love themselves. Part of that requires to respect their community’s wishes and their disabilities. If we teach our children that they have to be separated from their disability, doesn’t that further the stigmatization? Being a good advocate requires nurturing our kids, not to make them feel negatively about their existence.

It made me feel humiliated when the class was asked to explain why “an autistic person” is obviously wrong – immediately after I had mustered up the courage to speak up and say we prefer that. I cried after I left, because I felt disrespected and my experience as being a part of the autistic community didn’t count. It was as if my autistic voice didn’t matter, and conveyed the constant, overwhelming societal routine of ‘shut up, we know what’s best for you.’ It reminded me of all the times I was told I was broken and the world doesn’t think my words have any value. Of course, the professor meant well – person-first has been pushed on people for years. 

I sent the professor several links to studies, articles, and stances to back up my feelings. The next class, he actually took the time to explain to the class how there is a movement for using identity-first. The fact that he listened absolutely astonished me, and he’s been a fantastic professor all semester.

Still, we have a long way to go.

Most people are rarely as understanding as my professor was.

We fight so hard to be accepted and to be able to exist in the world. When autistics speak, few actually seem to listen.

If my voice isn’t good enough, maybe some of the following voices are:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5545113/ : ‘The use of person-first language in scholarly writing may accentuate stigma’

https://www.thinkinclusive.us/why-person-first-language-doesnt-always-put-the-person-first/ : ‘Why Person-First Language Doesn’t Always Put the Person First’

https://autismwomensnetwork.org/failings-person-first-language/ – ‘The Failings of Person First Language’

http://www.autism.org.uk/about/what-is/describing.aspx – A link that describes studies and information.

https://musingsofanaspie.com/2014/06/18/the-logical-fallacy-of-person-first-language/ : ‘The Logical Fallacy of Person-First Language’

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3519177/ – ‘Person-first language: Noble intent but to what effect?’

http://aspitude.blogspot.com/2009/03/autism-first-language.html – ‘Autism-first Language’

http://doodlebeth.com/identity-first-language/ – A very informative comic

https://twitter.com/doodle_beth/status/899553495292026880 – informal Twitter poll that may be of interest.

https://www.eurekalert.org/pub_releases/2017-08/osu-sad082817.php#.WaSLL_syUzg.facebook – Disability pride and its effect on self-esteem.

http://www.autismacceptancemonth.com/resources/101-3/ways-of-thinking-about-disability/identity-first-language/ – Identity-first

As always, just keep stimming.
Especially when they tell us not to.

Uncategorized

Dysautonomia Awareness Month!

Update: since this post, I have been to Vanderbilt’s Autonomic Dysfunction Clinic! Not surprisingly, I was diagnosed with Hyperadrenergic Postural Orthostatic Tachycardia Syndrome.

 

Make noise for turquoise!
Actually, maybe not too much noise. I’m in a bit of a quiet mood today.

FBbanner2

Dysautonomia: an umbrella term for medical conditions that cause a malfunction in the Autonomic Nervous System (Dysautonomia International).

The ANS is what controls automatic functions in the body – such as breathing, temperature regulation, heart rate, and blood pressure. Dysautonomia isn’t actually as rare as people think it is, but it’s not very well-known either.

I have a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS, for short; don’t worry, I’ve heard all the jokes).

POTS is when the heart rate increases by 30 beats per minute (bpm)  – or 120 bpm – upon standing. Some may have a decrease in blood pressure, but overall it usually stays the same or even skyrockets. Many people with POTS may faint (syncope) or experience pre-syncope, where they feel as if they’re on the verge of fainting. Dizziness, fatigue, excercise and orthostatic intolerance, headaches, and nausea are some of the common symptoms also seen. However, each person may have slightly different symptoms. Some people with POTS function relatively well. Others are affected significantly, and it can difficult to cope with.

I’ve been treated for POTS for over a year now, and my cardiologist recently ‘reconfirmed’ it this past summer when they did a 21-30 day heart monitor.

For me, this means that I have significant orthostatic intolerance and other problems. I’ve often fainted, although I tend to struggle with pre-syncope or collapse more because my body just doesn’t want to stay upright. When I stand up or walk, my heart rate skyrockets. It’s not uncommon for my heart rate to be 140 bpm after I transition from sitting to standing. That in itself can be very stressful. However, POTS isn’t limited to a high heart rate. My blood pressure also goes up as well, which is a bit of a nuisance.

12002195_832235113542036_3390048158369557604_n1
An infographic detailing all the various symptoms of POTS. There’s a lot.

 

In general, my body also has trouble with regulating temperature, migraines, severe fatigue, and blood pooling. Insomnia, nausea, and chronic pain are also typical for me. I also have problems with GI and absorbing vitamins, but that’s something we’re still working on figuring out. There’s always some sort of medical testing going on.

Heat and exercise can also make it worse. Like I said before, I’m not great with temperature changes and I can’t stand heat. I used to tolerate heat extremely well as a child, but now I can’t deal with it at all. Exercise is also difficult, especially considering just standing up gets my heart rate into the higher levels. Swimming is supposed to be very good exercise for POTS patients, but I haven’t been able to make it to the pool yet this semester.

Basic activities such as cooking and simply walking is exhausting for me. This combined with my executive functioning skills sometimes means I’m just too tired to make food or make it to class. If I do make it to class, my brain fog can create difficulty concentrating and comprehending – something that makes my mild neurocognitive disorder worse. Currently, my ability to function is comparable to someone with congestive heart failure. As for quality of life, it’s considered to be similar to patients on dialysis for kidney failure.

This also means that when I get typical illnesses like the cold or flu (I call it getting “muggle sick”), I’m out of commission a lot longer than I normally should be. My body doesn’t handle it well, and even a simple virus can land me in the emergency room.

I end up in the ER a lot due to complications of it, especially when I’m not able to drink enough fluids (no, seriously; I’m supposed to go through a lot of Gatorade). Amusingly, I was in the ER last night due to a viral infection that exacerbated a lot of problems with my POTS – severe dehydration being one of them.

snapseed
Taken literally last night at 1:00am. Getting a bag of fluids intravenously due to dehydration – and looking very grouchy too.

 

To help function better, I use a wheelchair to help get around campus and places where standing is constant. I’m hoping to eventually get an electric wheelchair to help me get to class, as collapsing on my way to Writing class isn’t going to do me any favors. I’ve already missed quite a bit (between POTS and other illnesses, everything’s been a mess), so fingers crossed that gets approved soon. If it does, I could even do my exercises in the pool! It’s all about fatigue, brain fog, and not passing out, honestly.
I do use a cane if I’m in a cool, flat small environment with lots of chairs. My balance is really terrible (yay for mild TBIs and vestibular issues), so I have to have some sort of mobility aid anyway. All of that said, it’s extremely important to keep up leg muscle strength. Deconditioning can make POTS so much worse, and that’s definitely something I try to work on. I personally hate having to rely on my chair, but it also allows me to do more – and to save energy so I can use my cane later!

20245568_1378080302308245_5756043257872383193_n
Me sitting in my wheelchair and hugging a dog during a volunteer event at the animal shelter last spring.

I also eat lots of salt and drink Gatorade, as well as wear compression tights. The salt and Gatorade are good for blood volume and hydration. The compression tights are great for the blood pooling and swelling, but they are also the worst thing ever for sensory problems. Typical, really.

There are some conditions that many people with POTS also have: Mast Cell Activation Disorder, Ehler’s Danlos Syndrome, and Gastroporesis. I’ve not been diagnosed with the first two personally, but I have several friends who have. However, my GI doctor is convinced I have Gastroparesis.

There’s no cure for POTS, unfortunately. I’ve been referred to Vanderbilt for an appointment with the Autonomic Dysfunction clinic, so it’s more of just a waiting game at this point. One of my friends recently went, and I’ve been told good things about it!

While POTS is supposedly “rare” according to Google, it’s probably far more prevalent than what people expect. A lot of people are diagnosed with anxiety first, because doctors don’t always have experience with it. Dysautonomia itself is definitely not rare, especially considering all of the different forms it takes! Not only does it encompass POTS, but it also includes Neurocardiogenic Syncope (NCS) and Multiple System Atrophy (MSA).

If you want to know more about Dysautonomia or POTS itself, there are a few really good websites:

http://www.dysautonomiainternational.org

https://www.dinet.org/

http://www.potsuk.org/

If you know of any others, feel free to let me know and I’ll add them!