Note: This post discusses the topic of filicide and violence against people with disabilities. Take caution in reading, and be mindful of how it may impact you. Your mental health is always important. 

On March 1st, my college campus will feel a little different.

Usually, March is the month of midterms, spring break, and a slight weather change for the better. You begin to dream of no longer needing that wool coat and scarf; instead, you stare longingly at those shorts you’ve been dying to wear since October rolled around. People begin to see the end of the semester coming near, and it’s exciting.

But not that day.

You see, the first of March is a different day.  It will feel more like shadows, the brisk cold wind still rushing past my face. It’s still winter, a bit darker and cooler than I’d like. Even so, there’s still a tinge of hope every time I step into a sun ray’s path.

March 1st is the Disability Day of Mourning.

Created in 2012 in response to the death of George Hodgins, an autistic man, the Disability Day of Mourning vigil is held each year to commemorate the lives of people with disabilities who have been murdered by family and caregivers. The Autistic Self Advocacy Network tracks cases of filicide, and each year, the names of the dead are read out loud. Just in the last year alone, more than 100 cases have been reported.

Sounds horrific, doesn’t it?

Yet, people will defend the murders as “mercy killings” or “understandable.” They try to justify it as “just a lack of resources” and say “it’s just so hard.”

This is where the problem lies. This is why our children, teens, and adults with disabilities are dying. Parenting and being a caregiver is hard, but that will never justify filicide. They never say these things about typical children’s deaths; why should a child’s disability change that?

Society and our culture views disability as a fate literally worse than death.
Autism is feared so deeply that our society shuns those on the spectrum and grasps at straws to “cure” us – when we are literally begging for supports, accommodations, and our voices to be heard instead. Intellectual disabilities are so stigmatized that people forget the joy and beauty that each person brings to the table. Physical disabilities are seen as difficult to accommodate – but that accommodation is a civil right and deserved.

This stigma, negativity, and fear is exactly why people are dying. People get so convinced that disability is the worst thing to ever happen to someone, and immediately decide that our lives are less because of it. They decide that being a caregiver is just too much, and they choose to kill us because they think we’re the problem.

We’re not the problem. We have never been the problem at all.

As an autistic person with mental and physical disabilities, my life is automatically seen as less in the eyes of others. I already struggle with chronic depression, but the outside world has much more to say. I am painted as a burden by society, a drain on resources. I am seen as weak, weird, and a liability. I am told all the things I will never do, and all the things I shouldn’t be allowed to do. Society tells me that I will not have my own home, have children, and that I will never be able to live independently.

I have been told directly by others that I should not be allowed to live, and that I definitely should never reproduce – lest I continue to ruin the population. I could very easily be one of these statistics. Whether it be my autism, PTSD, brain injuries, or dysautonomia that forces me to use a wheelchair and cane – I am easily classified by society as a burden. Would my murder be considered a “mercy killing?” Some would say yes. At this point, it does not surprise me.

Society is wrong.

My life is not worth less just because I have a disability. I am disabled and I am allowed to take up space in this world just like anyone else.  I am capable of experiencing love, joy, sadness, heartbreak, and the multitude of emotions that make up a life. Even if I live a life that is different, I am allowed to exist.

My community is entitled to the same human rights that everyone else has. We are allowed to exist.

We shouldn’t have to convince the world that we should be allowed to live; yet, here we are. My community holds up a candle, a symbol of remembrance and illumination. We come together, whether in person or online, and we stand in solidarity with one another.

Here I am, a broken record constantly assuring myself and my community, “Yes, I belong. We all do.”

On March 1st, light a candle for those we’ve lost – and those of us who are still here to fight.

To find a local vigil near you, ASAN has provided a list here: http://autisticadvocacy.org/2018/02/2018-day-of-mourning-vigil-sites/

Apparently, the beginning of 2018 brings a lot of change.

It’s not something that a lot of people like, but for autistics – even more so. Even when the changes are great.

Over the winter break, I moved dorms! It’s a lot bigger than what I’m used to, and it has a laundry room in the apartment AND a window. Seriously, I am beyond excited about actually having sunlight in my room.
I also have a roommate, who is quite nice. She has postural orthostatic tachycardia syndrome just like me, which is exciting.  We’re good friends, so it’s working out quite well.

As well as that, we started out with the new semester this week! I’m looking forward to the classes, as most are online.

I’m also going to Nashville later this month for an appointment at Vanderbilt Hospital. I’ve been waiting a year to go, so I’m excited. It’s a long drive though, and I’m dreading it a bit.

I also turn 21 this month. I’m not sure I’ll even celebrate it, as it just doesn’t feel that important.

Even though all the change is positive, it’s also very stressful and draining. I’ve slept so much lately that it’s a bit ridiculous – and there’s still boxes all over the place because I haven’t had the spoons (energy) to even hang up drawings on my wall. I’ll write up a post sometime soon regarding burnout and tips to avoid it, once I manage to actually do well at it.

To be honest, I think the cat has adjusted much better and more quickly than I have.

Seriously, she’s loving the place and thinks she owns it.

Then again, my room is filled with her toys – so I guess she does already own it.

Once this month and adjustment period is over, I should be fine. That’s what I’m telling myself, anyways.

Note that this article contains a discussion on functioning labels, medical bias against autistics, and similar topics in the autism community.

One of the most common questions I get when I mention being autistic is “So, you’re really high functioning?”

Yikes.

As I’ve mentioned before, functioning labels aren’t really my thing – or most of the autistic community’s either. There’s been a shift from functioning to support levels, or simply just saying what the needs are for each individual person (my personal preference).
I personally think functioning labels are rather harmful – not only for autistic people, but their families too.

When you’re too ‘high functioning,’ you’re denied supports you desperately need simply because you’re not “bad enough” in people’s eyes. And when that happens, we are at risk of becoming the statistics: mental illness, homelessness, lower life expectancy. You’re denied a voice in the autism community because ‘you’re nothing like my child’ – although there will always be a difference between a five year old child and a young adult.

When you’re too ‘low functioning,’ you’re denied the autonomy that you so rightly deserve. The assumption lies that you are unable to experience life – no love, no voice, and that you’re a burden. You’re denied a voice in the community because “you don’t know what’s best for you” and to not “bite the hand that feeds you.” Calling someone “low functioning” is cruel and dehumanizing, and expectations for their quality of life are set low.

Autistic people deserve better than this, no matter where they are on the spectrum.

For families, the harm lies there too. These functioning labels hurt everyone, not just the people on the spectrum.

If your kid is “high functioning,” it’s a ‘discpline issue’ or a ‘your kid isn’t really autistic’ to the quiet yet outright denial of services such as IEPs and behavioral intervention plans in schools. You read in horror of how your child could become one of those statistics from above, and you are judged because your kid “seemed fine yesterday.”

When your child is considered ‘low functioning,’ you’re painted a horrible picture of their future. You’re (wrongly) told that your lives are over, and that they’ll end up institutionalized. Your child will be less likely to receive life-saving medical care such as organ transplants – all because their quality of life is seen as less.

Let me describe to you two separate scenarios of how autism can present itself:

• In the first scenario, we have someone who you would consider quite independent. This person can speak somewhat eloquently, although they might seem a little “odd.” They live alone, make their own appointments, and are involved in several different things that keep them very busy. They have the occasional meltdown, but otherwise are seen as not having too much trouble. A schedule is absolutely necessary to keep them grounded, and they have a special interest that they are happy to share about constantly – which can cause some social difficulties.
• Within this second scenario, this person is seen as needing high support. Professionals have said they are not suited to independent living whatsoever, and their paperwork says they have “severe limitations” that keep them from living an average life. They are unable to drive, have to be prompted to eat and use the restroom, and are often non-verbal when overwhelmed. They have self-injurious behaviors such as hitting their head, severe picking of the skin, or scratching. It’s also difficult for them to communicate where they are hurting and sick until it’s too much to handle. They rely on scripts for all interactions in order to communicate, and phone calls are very difficult for them. Social events are extremely draining and hard to properly navigate.

Now, it’s pretty to simple to see which person is considered high or low functioning, right?

Wrong.

In case you hadn’t picked it up: both of them are actually me.

I’ve had several digs made at me by people saying I was too “high functioning,” and that people who are “low functioning” wouldn’t agree with the concept of neurodiversity. (Fun fact: yes, they do.)

I’ve had people tell me that my autism is obviously not a disability, because it doesn’t significantly impact my life – or that I was given the wrong diagnosis.

Considering I was in neuropsychological testing for about SEVEN hours, I think the doctor’s evaluation might have a little more weight compared to the person I’d met about five minutes ago.

I may look like I know what I’m doing, but almost 9 times out of 10, I’m doing what we call “masking.” If I was able to freely be myself, I’d be much more outward with my autistic behaviors. I was trained from a young age what was considered appropriate vs “too weird.” As a result of not being able to exhibit these behaviors, my mental health deteriorated. I threw myself into my academics and special interests instead.
By the time I hit high school, burnout was a huge worry for me.

Burnout is what happens when we autistics “mask” our traits and try to blend in with neurotypical people. When this happens, it can have disastrous effects. It can even  manifest itself in depressive episodes or mental breakdowns. For me, I feel incredibly run down and my depression becomes severe. My brain will hyperfixate on suicidal thoughts, and it’s not a state of mind that anyone should linger in. Add in the chronic pain/illnesses, the past trauma, and the hectic environment of college life – it’s easy to see why this is a problem. Sometimes I’m out of commission for a few days due to this mixture, because I know I can’t overextend myself or I can’t function at all. Over time and ~15 years of intensive therapy, I’m beginning to slowly build up coping skills and how to demonstrate more resilience.

People don’t realize just how much energy it takes for me to not curl up away from all the noise and people in public. Sometimes it’s too much, and I still break down crying. I had to learn how to play my part in this impromptu play-piece that everyone else appears to have memorized the script for. Because I learned how to be the human equivalent of a chameleon, I have the ability to “fake it” until I can get out of the situation.

When you have to grow up quickly, you learn ways to simply survive your current situation – and suffer the repercussions later.  It is exhausting to go through the motions, as if mentally checking off a list for each interaction:

• Make sure to fake the eye contact; lip read, or stare at eyebrows if you have to.
• Which script template should I use for this? Are they asking about classes or my cat?
• Was that sarcasm? What’s in the context to tell me so?
• Does their face actually mean that they’re happy or are they just tolerating me?
• Wait, was that their name? I can’t remember what they look like.
• Don’t make that squeaking noise. Don’t script something out of context. Don’t mention that thing that you just really LOVE because they reminded you of it.
• Was that socially appropriate to mention? Oh NO I MESSED UP.
• Ignore the light, ignore the sound, pretend your head isn’t hurting, ignore the pain from the tag.
• Keep the noise cancelling headphones away; they’ll all say you’re incompetent.
• How much longer can I take before I start crying and need to go hide in the bathroom again?
• Do they actually like my existence, or do they secretly hate me? What am I doing wrong this time? How do I FIX it??

All of this rushes through my head with nearly every conversation, and it can be difficult. When I go non-verbal, my brain is just too tired to continue. It’s hard to make sense of anything, and my mind seems to have forgotten how to do words.

All of this to say: yes, some of us need more support than others. It’s a spectrum for a reason, and we all experience our autistic nature differently. We’re diverse, and we are all part of a great web of neurodiverse society.

Even so, referring to us as “functioning” degrades us as if we were machines – not human beings with our own emotions, thoughts, and ways of processing the world. It hurts not only us, but those around us, too. We need acceptance, support, and understanding. It’s not a race to see whose kid has it worse or which “Aspie” is more likely to be a savant. Functioning labels make this worse.

Based on that, I’d easily label the concept of functioning labels as harmful.

Each of us has our own unique struggles, strengths, and abilities. All of us on the spectrum have value and can make a positive impact in their world. Even the smallest act of kindness creates ripples and waves, and perhaps just the fight to exist and thrive in our society is revolutionary in itself.

I’m autistic. No more, and no less.