Where The F*ck Are The Birds And The Bees?: The Reality of Sex and Sexuality for the Disabled

So here’s something that I promised to post two weeks ago. I went on vacation and thought I’d have time to write this. I didn’t. So here it is now. Sorry about that. Also, I’m gonna be talking about sex, something I almost never do. I’ve never had a proper sex ed class and everything I’ll talk about comes from personal experience and research so you may notice some of my own personal hang-ups about it. There’s nothing I can do about that. Sex is highly personal. Everyone knows that. Except for douche bags who feel like they have something to prove.

The intersection between disability and sexuality can be a touchy subject. Because of the long history of segregation, mistreatment, sterilization, and infantilization of disabled people, they have emerged from that history desexualized. The stigma surrounding their sex lives is pervasive. They’re assumed to have either no sex life or a deviant or unhealthy one (eg. not having ‘real sex,’ being ‘oversexed,’ being too spontaneous, too rigid, too freaky, too vanilla, etc), although the lack of sex life is the more common assumption. Either way, a healthy, satisfying sex life is out of the question and the underlying assumption in nearly all cases is that they should be denied sex.

Because of this, disabled people are marginalized in the world of sex. The intellectually and developmentally disabled are thought of as perpetual children who want to remain virgins and the physically disabled are supposedly unable to have sex. Unfortunately, these views make things worse. Not only does denying their sexuality run the risk of repressing their desires and give them no outlet for expression, thus stunting their development, but also it makes them vulnerable to sexual abuse; they won’t know how to navigate (potentially) sexual encounters because no one thought to tell them how.

Consent vs. Sexual Abuse

We take it for granted that sexual abuse is a real issue and I won’t harp on it here. The numbers for the intellectually and developmentally disabled are staggering at 30% for men and 80% for women because they could be easily taken advantage of. They are the most sexually vulnerable group of people.

However, our feelings about disability and sex together are so conflicted and out of whack that even consensual sex is sometimes thought of as rape or abuse if it involves a disabled person. I’m not denying the reality of sexual abuse towards the disabled but because we assume that they aren’t sexual, we blur the line between consent and abuse. We don’t know if they consented because we never ask them and we never ask because we assume a lack of sexuality from the start.

I’m going to use the Anna Stubblefield case to make my point. To make a long story short, Stubblefield, 45, a philosophy professor specializing in ethics and social justice at Rutgers, is facing a potential 40-year sentence for two counts of (alleged) aggravated sexual assault towards DJ, 35, a black man with cerebral palsy who uses a wheelchair and is unable to speak. Stubblefield took him on as a student in 2009 and helped him learn to communicate using facilitated communication (a controversial method but that’s a different story altogether). According to Stubblefield, the two started developing romantic feelings for each other and had consensual sex twice (hence, the two counts) in 2011. The court found Stubblefield guilty on the grounds that DJ supposedly had the mental capacity of a toddler and was therefore unable to consent to sex.

It’s important to note that DJ was not allowed to testify – his only method of communication was considered unreliable in the court – and he was only used as evidence by his mother, who got the case started because she assumed that her son couldn’t have consented to sex due to his cognitive impairments. Since DJ was never given the chance to tell his side of the story, I can only conclude that we don’t know for sure if this is a case of sexual abuse or a real encounter to which DJ consented.

Again, I’m not denying the numbers – sexual abuse is a serious matter that shouldn’t be treated lightly – but after hearing and thinking about the Stubblefield case, I’m starting to wonder how many other cases were there where a court case is built on ableist assumptions and delivers a verdict in which disabled people are not treated like autonomous beings.

Sexuality As A Key To Good Development

I’m not just talking about the right to have sex without people thinking you have no say in it or thinking that you should be ashamed. According to Leslie Walker-Hirsh, an expert on the intersection of disability and sexuality, “sexuality is a huge part of a person’s development. It impacts how you perceive the world and how you interact within it.” So what happens when an individual or a society attempts to repress that side of themselves? Your personal development becomes stunted and you won’t know how to express yourself sexually when the time comes. It’s no coincidence that the more sexually open (NOT promiscuous) nations of the world tend to be happier and have lower rates of sexual abuse, teen pregnancy, and mistreatment of women. Obviously, the picture is more nuanced than that but that’s the general pattern and the same principle applies here.

Let’s face it. Everyone thinks about sex, disabled or not. Some think about it more than others but we think about it. It’s our way of producing children and keeping humankind alive so it makes sense from an evolutionary perspective to have sexual urges. We develop curiosity about sex early, which can be seen in children playing with their own genitals (not necessarily masturbating). If the myth that disabled people are non-sexual persists and if we don’t give them the room they need to explore their sexuality, it could negatively affect their social development, they will continue wondering what sex is all about, even if they don’t explicitly show interest, and it may show in unhealthy ways, which may lead to the stereotype of being sexually deviant.

Sexuality is not about being ‘hot’ or having lots of sex – assuming that simply being promiscuous makes one sexually mature is like assuming that eating a lot gives one’s body proper nutrition. It’s about taking full ownership of who you are as a person and how you handle your relationships with other people. It’s about knowing the meaning of consent, understanding the concept of personal boundaries, knowing what gets you off, taking control of your body, and not simply giving it to someone just because they ask for it. One should be encouraged to have sex and make mistakes along the way because this is the only way one can learn about and uncover their sexuality. It’s important to note that a well-developed sexuality and sexual identity can mean the difference between a boy/girl and a man/woman.

What This Means For Autistic People

If one’s sexual development is stunted or discouraged, one’s social development may be stunted too, which makes it a double whammy for autistic people who have enough trouble navigating social norms as it is. Sex is a whole other bag of mice. It can be hard enough to navigate regular social encounters but when it comes to navigating sexual encounters – with poorly tailored sex ed under our belts, if any – it’s nearly impossible. We’re left on our own and it can be terrifying enough to scare us away from sex altogether.

During the one time I had a one-night stand when I actually started exploring my sexuality, I had no idea what to do and it ended up being quite literally a fucking disaster. When you receive the message that autistic people shouldn’t have sex, you feel a sense of shame for having sex at all so I never talked about this encounter with anyone. This conflicted with the thought that I was 19½ years old, still a virgin, and needed to lose my virginity already. Now that I’m more sexually confident and have started coming to terms with the true nature of my sexuality, I sometimes wonder if I’m the kind of person who would actually enjoy one-night stands but I’ll never know for sure. I don’t know if it’s something I’ve repressed or if I’m just not that kind of guy but it’s something I’ll just have to deal with not knowing. I occasionally wonder how my sexuality would have blossomed if I felt freer to explore it without the shame or stigma that came with being autistic.

On top of being very socially awkward and poorly educated on sexual matters while still wanting it is the message that we should not be having it in the first place. There are parents like DJ’s mother who think of their disabled sons and daughters as too innocent and childish to have sexual thoughts, let alone be sexually active. Why? Because of the way they look and move?

To most of us, sexual frustration is a normal part of life. Not because we want it too much but because we are curious and yet are denied sexuality.

So What Now?

The first place to start is to assume that we are sexual beings as much as yourself. There’s no reason to assume we aren’t. Even if we don’t communicate interest in sex, we are interested in sex. We won’t tell you we are because we’re afraid of the judgment. Believe me, it’s there. We are not children.

Do not assume that we are all straight. There’s no ‘autistic sexuality’ any more than there is a ‘neurotypical sexuality.’ From asexual to polysexual, from straight to gay, from cisgender to transgender, our sexualities lie on a spectrum like everyone else.

We need sex ed classes specifically tailored for us. Create sex ed classes that address real issues that we may face, such as sexual abuse, how to navigate sexual encounters more gracefully, how to respect people’s boundaries, and…how to deal with sensory overload during intercourse.

It’s important to note that disabled people are not the only ones who suffer from a repressed sexuality. We cannot move forward in this until Americans stop being so prudish about sex in general. The attitude Americans have toward sex is damaging not only toward disabled people but also toward anyone sexual (meaning everyone). Our inability to talk about sex maturely is the root of all kinds of sex-related problems in America such as rape, teen pregnancy, spread of STDs, etc. Nations that are sexually open such as the Netherlands are not plagued by problems like this (I should also mention that the Dutch government subsidizes sex for the disabled, mainly for therapeutic purposes).

So…don’t be so damn weird about sex and stop taking it so seriously.

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Love in Chains: The Myths Surrounding Autism and Romance

This is a two-part series that addresses the topics of love and sex in relation to autism. I was originally going to make this one post but the intersection of sexuality and disability is wildly interesting and deserves its own post. I will post about next Friday.

My girlfriend is neurotypical. She’s not a saint but she’s my saint.

I would say that for people in our mid twenties, our relationship is beautiful and healthy. We love each other a lot. We build each other up, can talk on the phone for hours, and poke fun regularly without a hint of malice. We’ve reached a level of comfort that involves farting in front of each other and we’re not afraid to call each other out on our bullshit when necessary. She has been accommodating of my ways and has been explicit with me from day one. Not only are our thoughts and feelings constantly on the table but also we analyze them and use what we learn to make our relationship better. I managed to beat the stereotype of not finding love and found something extraordinary. She’s not just a girlfriend to me; she’s my partner. I could easily go on and on about her but for your sake, I won’t.

I’m not unique. Lots of other people on the spectrum have found true love. Unfortunately there are too many pervasive clichés surrounding the idea that the autistic are incapable of love or that they do it wrong, some of them affecting us deeply enough so that they become self-fulfilling prophesies. I want to address some of them.

We’re too preoccupied with our own interests to engage with another human being.

People who talk about autism seem to speak of autistic ‘obsessions’ as if they cannot be a catalyst to bonding with other people. My girlfriend and I happen to share a lot of nerdy interests and we frequently bond over them, whether it’s psychology or a mutual favorite TV show. If you are autistic and very interested in something, chances are there’s someone else who’s as interested as you are.

We have a narrow conception of love as a state of constant euphoria and are thus incapable of deep, long-lasting love.

Same for teenagers. Same for overly frequent watchers of romantic comedies. Same for anyone emotionally immature, really. The barrier to deeper love isn’t disability but a lack of maturity and/or self-knowledge, something that everyone should be responsible for cultivating. It’s the reason the majority of single people are single, not just autistic people, so pretending that this is a uniquely autistic problem is actively harmful to everyone, autistic or not.

The question to ask isn’t ‘does his autism prevent him from experiencing true love?’ but rather ‘is this person emotionally mature enough to love and be loved on a deep level?’

We lack empathy, which is a very important component of a loving relationship.

What looks like ‘lacking empathy’ can actually be a defense mechanism against the extreme amount of sensory input that we regularly face. I hear very different accounts of how our minds work from other autistic people but to use myself as an example, I take in a lot of sensory information at once but I process it one piece at a time. When I was growing up, I didn’t know how to filter this information but this is a process that neurotypical people take for granted.

If anything, because of the fact that we take in so much information, we are actually so empathetic that it can be crippling. If my girlfriend is in a vaguely bad mood, my mood becomes much worse than hers. If she’s in a really bad mood, then I could regress emotionally and risk making a complete fool of myself (this is my version of a meltdown). On the flip side, if she’s happy, I become ecstatic.

We are incapable of expressing love.

This one depends on who you ask.

Like any great couple, my girlfriend and I do occasionally fight. One day, she complained that I don’t say ‘I love you’ as often as she does and I was genuinely confused. I’m absolutely sure that I love her and showed her so several times. Why was she not acknowledging it? This genuinely made me question my capacity for love, although having been bombarded with the idea that autistic people are doomed to a life of loneliness due to their supposed inability to connect, I’ve questioned it for a long time.

It turns out that like neurotypical people, the autistic can have their own ways of expressing love. It turned out that I have different ‘love languages’ then she does. These love languages are broken down into five areas: giving gifts, quality time, acts of service, words of affirmation, and physical touch. She says ‘I love you’ frequently. I cook for her. She occasionally buys small gifts for me. I help edit her papers for her classes. She gives me surprise hugs. I give her a shoulder to cry on when she needs it. Et cetera. Our expressions of love are varied enough to keep our relationship interesting and deep.

We don’t want or enjoy sex.

Yes we do. Just ask my girlfriend. We all have different levels of sexual energy and to assume we are all asexual is misleading

And, for some reason, the flipside: we want sex too much.

It’s not called ‘being autistic.’ It’s called ‘having a high sex drive.’ Again, sex drives vary among us. We are not exempt from the diversity of the human experience.

Tune in next week for more about disability and sexuality!

Portrait of an Autist as a Young Man

As I start blogging again, I’m trying to get my head back into writing mode. It’s a struggle but I’m getting some ideas. In the meantime, I thought I’d satiate you by posting something I wrote in the past that’s related to autism: an autobiography of sorts. When I was applying to grad school a couple of months ago, one of the schools asked me to submit a 5-6 page autobiography chronicling the experiences that led to my decision to pursue education. I think anyone interested in autism would benefit from my story.

As all my fellow second graders were playing outside, I sat with Ed, a special-needs child the same age as me, and voluntarily helped him with his reading comprehension by reading with him. I vividly remember the sense of joy I felt when he pronounced the word ‘embarrassed’ correctly. I had a soft spot for Ed; I saw myself in him. We were both socially awkward, we both experienced bullying, and we both had single-minded interests. I was a special-needs child too, diagnosed with high-functioning autism.

While I was lucky enough to reap the benefits of inclusion throughout my school years and could’ve easily been in a worse situation, growing up in the special education system left me feeling inferior and eerily voiceless. Even after making significant progress, these are feelings that I continue to struggle with into adulthood. The distance that I felt from my peers for being different was enough for me to feel disempowered by a system that was ironically designed to help me. Despite the best intentions of my teachers, I sensed early on that they were working in a system that assumed that people like myself were broken and I concluded that my sense of empowerment had to come from somewhere else. I’ve never felt truly accepted for my disability in my school years, even though I was considered high functioning and appeared normal enough. At best, I felt that people were projecting career paths onto me; it took some time for my parents to accept the fact that I abandoned the idea of becoming an engineer or a mathematician, even as my math grades started dropping in high school. I only accepted engineering and math as options because they were convenient but the ambition was never truly mine. It was just something else that others wanted for me.

The first serious career idea I’ve ever had was becoming a musician. I took a lot of pride in this choice because it was the first decision that, after years of feeling voiceless and controlled, came completely from within. I made it a priority to know as much about music as possible. I learned how to play the piano and studied music theory, composition, music history, audio engineering, sound synthesis, and even dabbled in more obscure topics such as the physics of sound, the mathematics behind music theory, and aesthetics. After deeply immersing myself in a mostly independent study of music since I was 15 years old, I realized that becoming a professional musician is an unrealistic career choice for me not only because the music industry is in poor shape but also because I realized that the projects that I’d be most passionate about will leave me as a starving artist. However, I don’t consider it to be a waste of time. Other than simply having deep knowledge of something that I love, the greater purpose of my study of music was to give me a sense of self-empowerment and to help cultivate the intellectual vigor and curiosity to dive into other topics; I managed to foster creativity and a love of learning within myself by letting myself be. I continue to write music and plan to keep it that way.

After graduating from college, I had spare time in between graduation and my first job. Having had the silly idea of writing an autobiography at age 21, I decided to research autism in a (semi-misguided) venture to learn more about myself. I came upon endless resources but most of them referred to autism as a medical condition and the stories I found stirred up pity in the reader and shined a rosy but nauseating light on the autistic. I kept digging until I stumbled upon egalitarian concepts like neurodiversity and disability rights. I kept wondering why I’ve never been challenged to consider these perspectives. Were my teachers ignorant of them? Did they think that my ‘condition’ would somehow hinder my ability to understand them? Or was it because I simply didn’t seek them out before? And if it’s because I didn’t seek them out, why didn’t I? My research had shifted my thinking of autism drastically. It appeared less as a medical condition and more as a reflection of societal values.

I managed to keep my autism not just hidden but also pushed into the back of my mind as if it were a secret that I’m trying to keep from myself. Keeping it hidden meant not complaining in the face of sensory overload and pretending I understand subtle social cues and memes when I actually don’t. This may have led me to experience confusion and anxiety but it was preferable to admitting or showing that I was autistic. Coming to terms with it has been an ongoing process. I still sometimes wonder if I could ever be taken seriously as an autistic person. I realize, however, that publicly admitting that I’m autistic, given the stigma surrounding it, is a radical act in which I’m usually greeted with either ostracism or condescension.

I consider myself very lucky for an autistic person; very few of us feel like our voice matters and now that I have my own voice and the confidence to go with it, I want to use it well. The first time I got to use that voice was when I started working for [redacted for this blog post], an organization that provides many kinds of support and services to disabled people. I work in their [redacted] department, which specializes in work with autistic adults, as a lead mentor, helping our participants attend college, integrate into the community, etc. I discovered a diversity of people of varying ability and intelligence; I quickly learned that I had to develop a different approach with everyone. Some were more independent than others, some needed more help with interacting with people than others, and some appreciated my avant-garde punctuation marks more than others. This helped me realize that autism manifests differently in everyone and, like neurotypical people, developing a blanket approach to working with autistic people would not work, despite them falling under the same label and having similar issues.

I was slowly and unwittingly building the skills necessary to become a good teacher through bouts of tutoring and my work as a mentor at [redacted]. I realized that I wanted to be a teacher when I became appointed [redacted]’s first in-house private music teacher earlier this year and started giving lessons to a young man who receives services from us. I started to experience the same excitement whenever he had fun playing the keyboard that I did whenever Ed pronounced a word like ‘embarrassed’ correctly.

After reflecting on being autistic in this society and having a full-time job working with other disabled people, I’ve come to view the label ‘special ed’ as problematic. It is a byproduct of power hierarchies that favor those who are neurotypical or able-bodied. My experience growing up in the special education system, however, puts me in a position to be more sensitive to the needs of the disempowered children in my classroom, special ed students or otherwise, than an average teacher. One of my hopes as an educator is to address such issues in my lesson plans. Children are the best age group to tackle because they have no such values ingrained into them yet; feelings of hatred and discrimination are learned traits. The childhood stage is the best time to address issues of social justice; the concept of social justice becomes harder to grasp as one gets older and develops prejudice towards certain groups of people. Childhood is also the best time to nurture creativity. Cultivating my creative instincts is one of the best decisions I have ever made for myself, despite starting in my teens instead of childhood, and I’d be a different person without them; they have allowed me to transcend the tunnel vision mindset that a lot of people have, disabled or not. Even if I fail to address issues of social justice in the classroom, if I could nurture creativity, I’d say I’m successful.

Inclusion does not work in a bubble. It may be designed with the best intentions in mind but it does not shield autistic and other special-needs students from the negativity and stigma surrounding them in the media. I understand that reducing stigma against disability is a tall order but I want to do everything I can to combat it and the best way I could do it is to be an example.

I didn’t get in the school.

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.

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.