Living Life or Living on Life Support?: On Being A Direct Support Worker and What Goes on In This World

After being let go from my job as a direct support professional (henceforth, DSP), I have a chance to step back and critically think about what I’ve been doing for all the time that I didn’t blog. This is the culmination of three years of work so it may be a little long. Call it an exposé.

Introduction

Although anyone with a disability is eligible for these services, the work is mainly geared towards people who were in institutions like Willowbrook where disabled people were poorly treated and cut off from the rest of the world. The history of disability in the United States is dark and revolting, full of terrible housing conditions, inhumane treatment, and quackish ‘cures,’ and it wasn’t until the 1980s when anything resembling a civil rights movement for the disabled started. To learn more about this dark history, I urge you to read Robert Whitaker’s Mad in America (it’s more about mental illness but those who we call disabled today could’ve easily been lumped into the ‘mentally ill’ category back then). We as a society are becoming more accepting of disability but as I’ve seen on the job, some of the residue of our dark history remains.

For those who don’t know what a DSP is, they provide services directly to disabled people of all kinds. The nature of the services vary depending on the individual’s needs and their agency but broadly speaking, the DSP’s job is to provide a crutch for the participant/client/whatever-term-the-agency-uses and help them perform whatever daily living activities they need help in. For example, if they have difficulty navigating the subway system, you help them with that. DSPs may also help them become part of the community by doing fun things with them. I once went to a baseball game with a participant and I brought another to my place and jammed with him. DSPs also act as advocates, liaising with members of the community to meet their participant’s needs. The participant is the boss; it’s an empowering dynamic for them and it gives them a chance to experience independent living. It sounds counterintuitive but in some cases, their time with a DSP is ironically their most free. It’s important to know when to step in and when to step back and the best DSPs often times don’t look like they’re ‘working.’

I had been doing this for nearly three years and received a lot of recognition for it. I’ve won awards, been moved up to a lead role, making me one of the higher paid DSPs, and became considered one of the best in the organization. During the few times a month that I’m in the office, I commanded respect almost too easily. Sometimes I wondered if they just stroked my ego to encourage me to do all the work, which is likely because since my departure two weeks ago, no one that I thought I became friendly with has reached out to check in on me, not even families. It’s also possible that they’re used to DSPs leaving, including the good ones.

Rich in Our Hearts, Broke in Our Pockets

The direct support field is plagued with massive turnover rates, mostly because for what the job entails, the pay is abysmal. Remember when I said I was one of the higher paid DSPs? I was only paid $13/hr by the time I left. It’s better than the average $10.23/hr that most others make but even my wage was not livable – at least in NYC – unless I regularly worked overtime. And this isn’t a case of upper management being money-grubbers.

An agency of this sort, along with other non-profits, is funded mostly by the government. We have fundraising but 80% of our money comes from Medicaid and the salaries all across the company are sad. My supervisor only made $40K. And because we’re funded by Medicaid, we have to work within the system, which may result in us playing stupid bureaucratic games. Although we have room to experiment with novel programs, I sometimes wonder how we’d function if Medicaid didn’t have control over virtually everything we do. Either way, the organization constantly faces money problems, which leads to downsizing and cutting corners, which leads to reduction in quality of services, which will eventually lead to the agency’s demise.

Supervisors (we call them coordinators here) face a catch-22. They want the best and the smartest DSPs to stay but realistically, because coordinators cannot provide them with any incentive to stay for longer than a few years, the better DSPs either move up in the organization or get fed up and leave. It can be disconcerting for the participants who would then have to go through the process of getting comfortable with a new DSP every time their old one leaves the job.

Judging from the work culture at my agency, people who enter and do well in this kind of work have a very specific personality. A coworker once described everyone in the organization as “rich in our hearts but broke in our pockets.” Nearly everyone at my agency has an upbeat personality. They’re smart but don’t take themselves too seriously. Meetings were frequently peppered with laughter. My supervisor and I joked around a lot. And we still got shit done. It felt less like a faceless corporation and more like a closely-knit community of like-minded people striving towards the same thing. The work environment, however, is very delicate.

Play With Shit And You’ll Get Shit On You

If a DSP calls in sick, the coordinator has to either find a temporary replacement quickly or perform direct support work themselves, the latter of which may throw off their schedule. Being reliable and flexible when a DSP calls out is a huge, unspoken part of the job, no matter your job title, and will earn you respect very quickly. Do this too much, however, and you’ll become overworked; coordinators will figure out that they can rely on you and will consistently go to you if something happens. It’s hard having a good reputation.

Since the human factor is involved in this work and because the most valuable currency in this field is care, it can be emotionally difficult to turn down extra work, especially if you have a good reputation and are eager to live up to that. We all want to do good things for others but a good human services organization can exploit this fact to get their employees to take on more work than they should. It’s not like turning down a project. Unless you’re a psychopath or genuinely overworked, turning down an extra shift in this job can feel a bit like abandoning someone. Maybe I’m just sensitive.

As with any other human services type of job, getting too close with your participants can be dangerous, as their problems will feel like your own. I worked with someone who was going through some serious family issues throughout October and because I had a closer relationship with this participant than any other DSP, I was given the hard job of keeping his already-broken family together (I’ll write about this later). I started trying to detach myself from the situation two weeks in because not only was I working more than I should but also the situation was starting to affect my mental state, which then affected my work performance.

Do the Participants Really Benefit?

As I said, we get most of our funding from Medicaid so our work is largely bound to a faceless bureaucratic system. We have to display our progress to justify the flow of funds and in order to do that, we need to quantify our work, never mind the fact that quantifying this kind of work is preposterous. For example, my organization has what’s considered an exceptional employment program and they may brag about job placement and retention rates among our participants. It’s great and all; it’s more than can be said for the huge swaths of the disabled population that either are unemployed or have difficulty holding down a job. But what really goes on behind the numbers?

Our employment program is divided into two departments: The Employment department finds and sometimes customizes jobs for the participants and the SEMP (short for Supported Employment) department works to help the employed participants keep their jobs. My girlfriend works in SEMP as a SEMP Counselor. Her job is to manage a caseload of participants of varying ages who are employed. She visits them while they work once every two weeks to check in on them and to speak with their supervisors to resolve any issues that may arise on the job concerning her participants. In addition, if one of her participants expresses frustration with the job or a desire to quit, she has to counsel them and get them to stay in their job. I should add that her participants usually perform menial jobs such as pushing shopping carts, shredding paper, wiping tables, delivery, and other small, repetitive jobs that anyone would find depressing. Only one person on her caseload actually likes their job. While counseling may be necessary at times, she doesn’t get to challenge whether or not this is the kind of work they really wanted in the first place; her job is to placate them into staying, which keeps our agency’s job retention rates high. If our job is to empower them, then why are we cajoling them into staying in a dead-end job? Is it all for show?

It may have more to do with the fact that we are living in a time when disability is starting to lose its stigma. The older participants accept the work because they believe that there’s nothing else out there for them due to the years of oppression that they have faced. They are thankful to have any kind of work at all, no matter how menial it is. Maybe my girlfriend and I are both just high on youth and have our heads in the clouds but we believe that all of our participants are capable of more than dead-end work.

We do have younger participants in their twenties in our agency who are very smart and feel more capable of success in their chosen fields. They have come of age in a time when disability wasn’t as stigmatized as it was for participants who are in their fifties, who grew up when ideas like the refrigerator mother theory were popular. Thankfully, I got to work mostly with younger participants. I preferred working with them to working with the older ones; they were more impressionable and I felt like I still had a chance to help them become something great, rather than just placating them and helping them get by.

Conclusion and Comments to All in the Field

Direct support work is a flawed system but it’s the least flawed. It’s a better approach to aiding disabled people than, say, putting them in institutions or group homes, shielding them from the world, and not giving them a chance to simply exist on their own terms. DSPs, along with special educators, social workers and other such people, are working to foster acceptance of disabled people. A good DSP, rather than shielding them from failure, gives their participants room to fail and learn from it. A good DSP gives life, not just life support.

If you want to pursue this work, the best advice I can offer is to maintain your personal sanity and to advocate for yourself as a worker. Don’t take on more work than you need to. Even if they say it’s an emergency, they can find someone else. Yes, the participants are important but if you feel like you can’t advocate for yourself, how could you possibly feel empowered to advocate for someone else? After working overtime for a few months straight, I became frustrated with the job and slipped as a worker. If you are of sound mind, you can do this job well but if you feel like you need a vacation, I highly urge you to take one. While this is true of all jobs, the importance of time off increases here, since you are working with people and they will pick up on and become affected by your mood. I don’t care if your supervisors give you a hard time about it. If they do, let them fire you and go find a different agency.

You may need training depending on what state you live in (I know California requires it) but in New York State, it’s possible to get started with just a high school diploma and a good heart.

If you hold a high position in an organization that employs DSPs, I challenge you to institute a sabbatical for them, in which they take at least three weeks of paid time off per year. Due to our low wage, most of us cannot afford to take time off, even though we need it. The participants will benefit too; it’s best to spare them a DSP who needs a vacation and find a temporary replacement. It can be difficult finding a replacement but your DSP will come back rejuvenated and will most likely perform their job better. If a sabbatical is outside your agency’s means, try giving your best DSPs a salary instead of an hourly wage. That way, it will feel more like a real job and provide more incentive for them to stay for the long term. There’s no getting around it. If you don’t treat your DSPs well, your agency is for shit.

If you are the parent or caretaker of someone who receives services, give their DSP the benefit of the doubt, especially if they’re overworked. This may be a thankless job but it doesn’t have to be.

If you want to work with disability in the future, becoming a DSP is a great and easy way to get started. You’ll get a lot of hands-on experience and you’ll be more privy to what goes on in this population. It’s an especially good experience if you’re interested in social work or special education. I’ve seen and learned a lot and my experience in the direct support field will be part of the base that I build my career on.

A WORD FROM MY SPONSOR: Do you experience a lot of what I have outlined here as a worker – that is, frustration, feelings of futility and incompetence despite praise, etc.? Does your employer provide bootleg insurance or no insurance at all? Maybe free therapy is the way to go! Check out this resource from BetterHelp.

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Not-tism: On Writing

Welcome to this ‘not-tistic’ post, a post on Angry Autie that is not related to autism. You’ll see these every now and again because I am certainly allowed to have interests outside autism, right? I’m interested in a lot of things, chief among them are music, philosophy, and psychology, and if I want to write about any of them among other things, I will. If, for some reason, this confuses or upsets you, do what any reasonable person would do and feel free to not read this post. Or you could read it and create an oblique interpretation of my words and thoughts in juxtaposition with my autism. Either way, I’m unconcerned.

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As I got used to the fact that I am not working full-time anymore and started shedding my worker-drone personality, I started writing again.

As the months had passed since I started working full-time, I felt my mind begin to erode. My existence was validated more by my supervisor than by people that actually mattered to me and my sense of self was melting. It wasn’t until a few days after I got fired that I realized that writing is what helped keep my sense of self in tact. I forgot about my love for all things intellectually stimulating and I didn’t read as much as I used to.

In my case, writing about my experiences with autism and things I’ve seen on the job has helped me not only understand myself but also become a better mentor for my participants and has informed any future practice involving autistic people. It has forced me to sit down and reflect. When you work full-time, it’s difficult to find the time and energy to write and make sense of everything you experience. When you don’t put effort into making sense of your experiences, they become unintelligible blobs of mental nothingness that just whizzes right by you. You don’t process it, it washes over you. Either that or, in the case of unpleasant experiences, you don’t come to terms with it and it just silently rings in the back of your mind like an unrelenting fly.

Writing forces you to face those thoughts and be articulate. The rules of grammar and Strunk & White’s The Elements of Style are there for a good reason. Language is built on a logical framework. Thoughts are arguably nothing more than wild, amorphous, and unintelligible feelings and drives when they stay in your head but when they’re written down or even spoken, they take on a new form. They become tangible. They start to exist in the world. People start to understand you, hopefully. Have you ever told someone an idea you had, only to realize how stupid it is midway through your sentence? Have you ever had a time when you had difficulty describing a thought or a feeling to someone? Those things most likely mean you didn’t take the time to process it and understand it; either you just let it sit in your head without touching it or the thought just popped up and you felt the inexplicable need to express it. Granted, there are feelings and experiences that are very difficult to describe such as the transcendence you experience when you hear beautiful music or look at beautiful art but on the whole, writing is a way to make sense of what you think.

Writing forces you to be logical. Not only does writing make your thoughts clear, but also it gives you a chance to analyze your thoughts and see if they add up. People are capable of logic but they are not always logical. The mind is a beautiful and chaotic place where thoughts are disordered and arise erratically. They may also be affected by one or more cognitive biases. When you write, however, you have a chance to reign in your thoughts, put them in order, and then put them under scrutiny. Logic is a skill that can only be used consciously and writing is a great way to exercise your logical thinking.

Most importantly, writing could be a great source of sanity. It’s different from watching TV or playing games on your iThingy or your Naystation in that you’re actively using your mental capacities and confronting your inner demons. Everyone has inner demons and anyone who says or thinks they don’t is either lying or not in tune with themselves. TV and games, while fine every now and then, are just distractions. Ironically, since I stopped working and started writing, I started watching less TV. I worry about people who just watch TV or play games to cope with bad situations.

So dear autistics and not-tistics, write. Just write. Write about anything. Write about what’s bothering you. Write about something that interests you. Write a journal. Write something! Whatever you do, if you plan to publish it or show someone, don’t forget to edit! If you don’t edit, your writing was all for nothing. I usually go through my posts at least five times before publishing.

Another thing that I like to do to make sense of things is to go outside and talk to a tree but that’s because I can get away with that in NYC.

I’m Back!

I recently got relieved from my duties as a support worker. Around the time I stopped blogging, I went from doing my support worker job part-time to doing it full-time, which ended up being a mistake for me. I became so focused on my job that I barely made time for myself. A lot has happened in the year and a half from the last entry on this blog and now. I won’t bore you with every little detail but I’ll tell you the basics.

Other than leaving my job, I got accepted to graduate school at Hunter College to study early childhood education and special education. I learned the hard way that working with autistic adults to help them improve their lives it a difficult task, at least one that I’m probably not suited for anyhow. After some soul searching, I realized that my efforts and support style are better suited for children. Adults, autistic or not, get stuck in their ways whereas early intervention can make a huge difference.

I also fell in love. I’m very happy with her, she makes me a better person, and I don’t give a flying-pedophile-rat-fuck how cliché that sounds. She’s getting her MSW, is planning on entering the field of law to advocate for autistic people, and our four-month anniversary was a few days ago. Other than the fact that there’s probably nothing out there better for me than her, autism and dating is ripe, virtually uncharted territory and I’ll probably write something about it. The short version is that no matter your brain chemistry, as long as you work on being the best person you can be, there’s someone for everyone.

My (old) organization also appointed me their first in-house music teacher. For two hours a week, I provide music instruction to someone who receives services from the organization. I devised an approach that is part instruction, part therapy, which is proving to be successful. Even though I no longer work as a support worker, I still do this for them.

I also read through my own blog recently and realized that I took on a very important intellectual task and stopping it was totally stupid. I’m gonna get back on the horse now!

Privilege and You: What It Is and What You Can Do With (Not About) It

What It Is

If you know what privilege is as it pertains to social justice already, read this post anyway. If you are educated enough to know what ‘privilege’ is, you already have privilege and it’s likely that you are privileged in other ways as well. Privilege is a nuanced yet vital concept to understand because it affects everybody. Understanding how privilege works will help you understand your place in society.

To put it in the most general terms possible, privilege is a set of personal attributes, from birth or gained/lost over time, that determine how others perceive you, depending on the society that you live in. By personal attributes, I mean features of one’s identity, including but not limited to race, religion, gender, sexual orientation, disability, body type, economic class, etc. How others will perceive personal attributes will depend on the stereotypes that they are most familiar with.

Privilege and disadvantage are not absolute. Even the most privileged among us are disadvantaged in some ways and some of the most disadvantaged are privileged in some ways. As much as I speak out about the position of autistic people in society, I must acknowledge that I am privileged in virtually every other way. I’m male, straight, white (actually half-white but I pass for white so that counts), cissexual, not physically disabled, middle class, educated, young, and taller than average. Other than being autistic, I actually have it pretty easy. And the fact that I pass for normal helps (sometimes it doesn’t but that’s another story).

It’s not easy to learn about the ways in which you are privileged. After all, if you don’t experience the microaggressions (small acts that feel hostile to the recipient) that come with being part of a disadvantaged group, it’s hard to imagine how certain actions can make public spaces feel more hostile for the disadvantaged. If you rarely get questioned about your personal attributes or lifestyle choices, it’s hard to imagine how others could be questioned and that makes it hard to see how doing so could be considered rude and not necessarily seen as just a matter of curiosity. Call it an unintentional failure of empathy.

Other than being autistic, I’m fat and enjoy eating (and I eat fast). My bodily proportions are more ‘acceptable’ now than they used to be; in high school, I was really fat. One day, during that time, I went out to the pizza place near my school and got three pepperoni slices (I was really hungry) and I scarfed them down. An older gentleman was watching me eat and he started interrogating me about my weight. I was offended and didn’t want to answer his question so I pretended that I didn’t hear him.[1] He became confused about why I wouldn’t answer his question and got upset with me. Clearly, he did not understand why asking a total stranger about his or her weight is not cool. This was a manifestation of his privilege and an example of how one could be blinded by their privilege to how unacceptable their behavior can be. In addition, this gentleman was black so it further illustrates how even people who belong to disadvantaged groups could also be privileged in ways that they may not realize.

What You Can Do With (Not About) It

Privilege may blind one to grave injustice and even compel one to justify various instances of injustice but I want to stress that privilege is not the enemy. In fact, privilege can be very helpful in promoting understanding. Since your privilege makes your voice seem more important than those who lack privilege, you could use it to defend those who lack privilege. Privilege gives you the power to criticize someone for making a sexist joke. Privilege gives you the power to call out a restaurant for refusing to serve your gay friend. At my job as a support worker, privilege gives me the power to call out people for not accommodating the people I support (as far as I’m concerned, it’s a part of the job description).

Privilege is not and should not be an insult. Privilege is a fact. As I said, privilege is a collection of attributes that a person has, which influences the way that others perceive him or her. You cannot get any more factual than that.

In various branches of social justice (feminism, black studies, etc), there is a common misconception that there is an enemy. For feminism, it’s men. For black studies, it’s white people. And so on and so forth. There is no enemy. All instances of injustice throughout history are instances of people believing that they are the hero of their own story and doing what they think or were brought up to believe is right. These people for the most part come from a place of ignorance, not malice.

“But whenever I try to talk to someone about this sort of thing, they accuse me of being privileged!”

Occasionally, people of disadvantaged groups who are aware of the concept of privilege will use their ‘disadvantage cred’ (for a lack of a better term) as an excuse to bully and exclude. It doesn’t happen often and this accusation usually comes from someone who is new to the concept; it provides a very convenient scapegoat. People have done this to me and once I started self-advocating, I’ve done my fair share of excluding and there is a lot of intellectual cowardice inherent in excluding people, even privileged people, from any conversation.

However, keep in mind that while it doesn’t help to play the ‘you’re-too-privileged-to-understand’ card with the intention of silencing, it doesn’t hurt to reflect on whether or not there was a legitimate reason that you were silenced, even if the person could have been nicer about it.

“Okay! I think I’m ready to use my privilege for good! What kinds of privilege should I look out for?”

Well, there is a lot. This Wikipedia page on privilege, which lists the most common forms of privilege, should help get you started. After that, it’s a matter of educating yourself, seeing more of the world, building your empathy muscle, and generally being less of a jerk to other people. To give a few examples, there is discrimination against sex workers, social spaces can be hostile to male virgins and women with a lot of sexual experience (‘sluts’), and in other countries, there’s discrimination against ethnicities that you may not have even heard of. You may be surprised to learn that there is discrimination against cyclists in America (especially here in New York City); I didn’t realize this until I made friends with some cyclists and took up cycling myself.

A good rule of thumb – and this should ideally go without saying, anyway – is to refrain from asking highly personal questions unless you know the person really well (i.e. asking a trans person what their birth name is), or questions that prematurely presume values that the person doesn’t actually hold (i.e. asking a woman when she wants to get married). If you are curious about someone’s ethnicity, you could try asking the more general ‘where are you from’ and be satisfied with whatever answer they give you, rather than ‘what black/Asian/Hispanic/Arab person are you’.

Just remember that no one is perfect. There will be times when you say thoughtlessly jerkish things and not realize it. Examining your own privilege is critical to understanding the experiences of people who may not be as privileged as you and making social spaces more safe for them. Despite what some people may have you believe, ‘political correctness,’ as it may be pejoratively referred to, is not for meek. Merely saying what you want without regards to the experiences of others around you is for the meek.


[1] In retrospect, I would’ve told him that I weigh 100 pounds and would jokingly ask him if he ever tried lifting 100 pounds at the gym.

The Line Between ‘Too Autistic’ and ‘Not Autistic Enough’: Is There One? (No)

And this, ladies and men, is yet another mechanism of oppression to keep the autism agenda at bay! It’s a simple one, too. The idea behind this one is that when someone is ‘too autistic,’ they couldn’t possibly know what’s good for them and therefore they cannot speak for themselves. When someone is ‘not autistic enough,’ they either are not really disabled or cannot know what ‘real’ autism is and therefore they are not allowed to speak for themselves, at least as autistic people.

The line between ‘too autistic’ and ‘not autistic enough’ (henceforth, the line) is never defined and those who use these two terms cannot define them in a way that goes beyond ‘I can just tell.’ The truth is this: the line doesn’t just not exist, it’s actually a cop-out, a convenience for anyone who wants to make a distinction but doesn’t really want to go through all the intellectual rigor required to do it convincingly well. Those who really do take intellectual precaution will see that the existence of the line is not supported by any standard.

My main argument against the line is the fact that autism is recognized as a spectrum. The idea of autism as a spectrum and the idea of the line contradict each other because there are no lines in a spectrum; everything meshes into each other. Think of the color spectrum. We may have colors divided up for our convenience but this convenience is misleading. It’s not clear when exactly blue turns into purple or when red turns into orange; all the colors elide into each other. It’s the same thing with the autism spectrum. It’s not clear when autistic becomes not-autistic and it’s not clear when ‘severely autistic’ becomes ‘mildly autistic.’ I’ve personally worked with autistics who have a blend of characteristics from ‘mild autism’ and ‘severe autism.’ In addition, much like the many shades of blue, there are many shades of ‘mildly autistic.’

Of course, the main difference between color and autism is that while colors remain nothing more than abstract byproducts of human perception, autism concerns real people in a broken bureaucratic system. How someone gets diagnosed has an impact on what kind of services they can receive. If one is considered ‘mildly’ autistic, there is a chance that they will miss out on some services that would be beneficial to them. If one is ‘severely’ autistic, they could mistakenly get placed in a class with intellectually disabled students, resulting in a pace of intellectual growth that is so slow that the misplaced child could regress.

Until the line is firmly established and universally agreed upon – and that’ll never happen – it’s a fake concept that intellectually lazy people use to do nothing but pass judgment on autistic people and, unconsciously, to silence them.

I get the accusation that I’m ‘not autistic enough’ all the time. Though I often joke about it when I get that accusation, I secretly get a little irate at the accuser for a couple of reasons. Firstly, I can feel the person using their neurotypical privilege to pass judgment onto me like they were the authority on me. That is to say, it’s a way of keeping neurotypical privilege and control over alternative minds in check. Secondly, because autism is heavily stigmatized, it takes a lot of energy for me to inform new people about my being autistic so it’s painful to hear someone deny it or explicitly claim that they don’t believe it. If I really weren’t autistic in some sense, I wouldn’t be expending so much energy in telling people about it in casual settings while potentially committing social suicide.

To wit, the line is political. Despite autism’s roots in science and medicine, the line is not based on science, medicine, or any other kind of rigorous definition but rather a glitch in human perception. That glitch, in turn, fuels yet another neurotic attempt at controlling others.

Martin Luther King Day Post: A Reflection on the (Ongoing) Civil Rights Movement

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Today’s Martin Luther King Day here in the States. I get the day off work (yay!) but more importantly, it’s a time to reflect on how far we’ve gotten in our civil rights stride.

Martin Luther King Jr.’s civil rights efforts were mainly aimed at desegregation and equal opportunity for African-Americans but the scope of civil rights extends beyond that. Civil rights is a relevant issue to anyone who fights inequality or is an advocate for any minority group, whether it’s African-Americans, women, Native Americans, the LGBTQ community, the disabled, and, yes, autistics.

There’s no way that I can write about Martin Luther King Jr. without sounding trite. Most of you already know who he is and why he was important (if not, you can always just look him up!) and I probably know as much about him as you. For that reason, I’m just going to focus on the state of civil rights, which is what today is really about.

Keep in mind that what I’m about to say is not directed at any public figure in particular but more directed towards the way more ordinary people understand civil rights as I’ve witnessed among my circle of people. It’s the thoughts of ordinary people on this issue that matter and say more about where our understanding is.

One of my biggest complaints about the way that some people handle civil rights issues is that they often portray it as a ‘David vs. Goliath’ issue. For example, some may think that you’re not pro-black if you’re not anti-white or the only way to combat misogyny is with misandry. Granted, you do have a lot to be upset about if you are in a minority group but by directing nothing but hatred toward your oppressors, you are actually increasing the tension between you and them and not actually working towards any kind of resolution. In such a person’s mind, they are being noble, because hating general groups of people is such a noble pursuit. Systems of oppression are often so embedded into our consciousness that most of the time, your oppressors are not aware that they are oppressing you. In this case, accusing them of ‘oppressing’ you when you feel cornered will only confuse and upset them.

Take it from me. I’m a straight, white-looking, cissexual, Christian, upper-middle-class, college-educated male – who’s also 6’2”, 1.88m, which helps in the privilege department – so outside the paradigm of mental disability (and weightism, but that’s another story), I’ve never experienced oppression and therefore I wouldn’t have fully understood oppression to be a real issue. I was unaware that women were being oppressed and I was trained to believe that what I was witnessing was just the way things are. And I understood being autistic the same way. I was originally a bystander in my own oppression. When you’re autistic and in the hands of authority, you’re conditioned to believe and assume that those in power really do know what’s best for you, even if you have weighty doubts about that.

Although I’ve become an advocate through my experience with autism, it’s important to realize that no system of oppression works in its own vacuum; they are all connected and rely upon each other to thrive. One cannot be a true civil rights advocate if they advocate for one group without awareness of other groups. For example, you’re not a good feminist if you only advocate for white, straight, neurotypical, etc. women (and if you only advocate for attractive women, you’re basically a faux-minist at this point). You’re not a good advocate for African-Americans if you exclude queer, fat, female, etc. African-Americans from your work.

The surface issues obviously differ for each minority but almost all the core issues remain the same for each minority: subjugation to double standards, an expectation to conform to the stereotypes of one’s group in order to be considered a legitimate member, limited opportunity, ostracism, stripping of power and personal autonomy, etc.

I’m for civil rights but not just for African-Americans, which is what most people would think of when they think of Martin Luther King, but for everybody. The work of Martin Luther King is not done and won’t be done for a long time but this cause, even over 50 years later, is still worth fighting for.

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On Political Correctness

Ever since I started writing about autism, I’ve become more aware of and more sensitive to other systems of oppression. After writing extensively about the role of language in propagating ableism, I’ve especially become more sensitive to such use in other systems of oppression. In racism/white supremacy, there’s the tendency of White Americans to call the indigenous people of America ‘Indians,’ rather than the term ‘Native Americans,’ because that fits the narrative of the White Americans and disregards the history of the indigenous tribes. In sexism, there’s the recent popularization of the word ‘bitch’ to, in a twisted turn of events, positively describe a female – by describing her negatively, that is.

I try to bring these issues into any discussion I have with people and they often accuse me of trying to make the conversation ‘too politically correct’ in this regard, which makes political correctness sound like a hobgoblin. People have been criticized for having no respect for others in conversation, which makes sense, but when have we started criticizing people for trying to foster on environment of respect for others? Since when was it uncool to be mindful of others and their experience?

Perhaps I should say something about the origin of the term ‘politically correct.’ The term was originally used to describe members of the Communist Party who adhere to the overly dogmatic principles of Communism. The idea was that to the Party’s followers, there was only one correct stance and whoever took that stance was ‘politically correct.’ The use of the term in describing Communists was meant to be insulting, of course; this is where the pejorative nature of the term comes from.

Now it has been reappropriated by the right wing as a means of smearing their ideological enemies (by subtly but incorrectly comparing them to Communists…) while avoiding the responsibility of engaging in meaningful debate. For example, in the hollow and reactionary ‘War on Christmas,’ right-wing pundits had described the effort to use the phrase ‘Happy Holidays’ in place of ‘Merry Christmas’ as too politically correct. Other than construing the effort as a personal attack on their beliefs, the argument doesn’t go beyond that.

Essentially, ‘politically correct’ is a clever right-wing term designed to dismiss rather than engage and its use speaks to our desire to appear tough and edgy (that’s the genius behind it). It frees one from the responsibility of actually being conscious of the implications of the words one uses and ultimately works to justify one’s ignorance and one’s incorrect and/or offensive use of words. Attacking an argument simply because it allegedly makes steps toward ‘political correctness,’ however that may be defined, is a logical fallacy in that it does not meaningfully address the actual argument and depends upon something other than reason to be considered a legitimate point.

In addition, it only serves the person using the term, portraying themselves as someone who engages in controversy or outdated ideas (usually in the name of ‘the truth’) while trying to appear noble or wise. Do not be fooled by the jerk in maverick’s clothing. In reality, it’s tricky to convincingly appear noble and wise while saying controversial things, repeating outdated ideas, or upholding archaic traditions. These are people who reasonably wish to exercise their right to free speech yet don’t want to take any responsibility for the consequences of what they say.

Exhibit A

Exhibit A

To the people who say that I’m too sensitive in these matters, I say that it’s better to be overly sensitive than to be desensitized.