disability

Tell Me Again Why You Can’t Work?

/ Russell James / 2 Comments

I find it hard to make friends at this point in my life. Not only are most of my peers are parents and occupied with the ubiquitous task of raising children, but I also don’t know who is safe to be around. When I meet someone I literally have to ask myself, “Is this person going to be a positive or a negative? Will they hold ableist views? Do they have the patience and understanding to be friends with an autistic person?

Most of the time, new people I meet bend towards the ableist side of things: they have no patience or understanding of what it means to be disabled and how difficult life is for people like me. This happened this morning. A person I’ve met since coming to Oregon posted a meme of a man who was a double amputee, his legs, and was working a construction job. The meme said, “Tell me again why you can’t work.”

Well, let me tell you. Again.

I got my first job at age 16 as a dishwasher for Friendly’s Restaurants. I quite a month later because the noise was too intense, and the pace was too fast for me to keep up. I worked pretty consistently for the next 20 years. I paid my way through college by always having a job and I worked full-time for my final two years. I got fired or “let go” of three jobs during this period, either because I made a series of social blunders, which weren’t tolerated, or I burned out (I was taking a full load of classes and was involved in student government, etc. on top of the unknown autism).

When I graduated college, I began working with kids who had “behavioral health issues”. Mostly oppositional defiance type stuff, but also autism all over the spectrum as well as attachment disorders. I worked this job for two years before getting another full-time job on top of it. Then I moved to New Mexico, where I continued working full-time at various positions I would eventually leave because I was burnt out by my autism and PTSD. I was a social worker, a landscaper, a gardener, a farmer, and finally, a therapist.

Here’s the pattern I would go through with a job over the past 25 years: I hit the ground running and immediately make myself as indispensable as possible. I work incredibly hard, take on a lot of projects and responsibility, and I shine as an employee for about a year, sometimes maybe less. Eventually I would burnout and become suicidal. I often ended up in the hospital for suicidality and would be forced to quit whatever job I was working. I took the initiative and got my master’s degree, and even finished a year and change of a PhD (which I left partly because I wanted to and partly because I was burned out). I tried to better my working situation but by the time I was 36 it was obvious my mental health was a long-term disability, which we of course now know is autism. It was always autism. Even part time work was untenable.

What causes burnout in autism? Social interaction, constant following of neurotypical societal norms that don’t fit with autism, making eye contact, trying not to fuck up social graces in the work place, masking anxiety and autistic behavior, constant overstimulation of sense with no time to recover, but most importantly: Having to be on stage every second of the work day so no one knows how hard things really are for you. If you don’t have autism, you’ll never suicidality and if I hadn’t been pulled from the work force I’m fairly certain dying by suicide would be a swift end to my suffering.

Adults with autism have incredibly high suicide rates because they are forced to work in environments the complete opposite of ideal, and they suffer in silence. Most autistic adults try and mask their autism, and this causes a great deal of stress and shame. When you are putting all your energy into not losing it at the work place you are inevitably going to lose it when you get home. Every task becomes much more difficult, like you’re moving underwater. Dishes don’t get done, rooms get messy, laundry piles up, hygiene becomes neglected. Forget about any wellness practices getting completed. I was just too exhausted to do any of this stuff.

Constant burnout with no recovery time does not work for autists. Our autism will decompensate (worsen) and it snowballs leading to complete lack of functioning in all areas of life. This is why I can’t work a real job. This is why I stopped trying. I didn’t stop working because I am lazy. Far from it, as anyone who knows me would say. I didn’t get on disability to fund my music. I did it because I had no other choice.

Let’s talk about what disability looks like. I get an $800 deposit each month that is supposed to cover my medication, food, utilities, and rent. Considering I paid into disability for 20 years, this is a meager amount. I am privileged because my wife has an amazing job and we’re able to afford our food and rent and all the other stuff, but it’s still hard and we are constantly on guard about money. As far as my music goes, I make very little. Some months are better than others, but for the past year plus I haven’t been able to make it on stage on a regular basis BECAUSE I’M DISABLED. See, even playing music requires so much effort that I often can’t do it and need to take months off from playing.

Anyone who thinks people on disability are doing it for a free ride is a dumb shit. If something happens to my wife I am completely fucked financially. I look at people living on the streets and think, “I’m one tragedy away from that life.” It’s a constant thought in the back of my head. It has been ever since I started being a social worker back in 2006. I was always afraid I’d become a client, and now I have.

Mocking people with disability shows an incredible lack of maturity, understanding, and empathy. I won’t stand for people like that in my life. It’s no use arguing with them, these days when you argue with someone you may as well be arguing against yourself. Also, arguing isn’t a strength of autism. It makes me uncomfortable. Instead, I’ll just write this passive-aggressive blog.

I don’t like being disabled. There are a lot of things I wish my brain was able to do that yours can, and one of them is handle working a job. But I accept my disability and its implications for my life. There’s an amazing amount of value in my autism and I wouldn’t trade it for the world.
People who aren’t disabled will never understand disability unless they work hard to wear the shoes of someone else. IMG_2796

Grateful

/ Russell James / Leave a comment

Grateful

I met my wife, Deborah when I was a junior in high school, somewhere around 16-17-years-old. She had long blonde hair, down to the middle of her back, she looked pretty sporty with her constant hoodie, and she hung with a crowd I wasn’t quite familiar with. Deborah worked on the set of a school musical where I had a supporting part. I don’t remember much interaction with her, as she was the quiet type and I was more interested in fitting in. Fitting in, to me, was about being as attention-grabbing as possible, so I was loud, ready to do anything for a laugh, and seemingly always on stage.

The following year I went on a water-skiing trip to which Deborah was also invited. We actually talked on the boat: Deborah was smart. I was intimidated because I️ was dumb (at least this is what I was told throughout my life). Deborah was in all the smart classes, had a position on the yearbook staff (not nerdy at our high school, more elitist jerks than anything else), was a star soccer player, and had an impressive collection of hooded sweatshirts. I only had one, it was black, covered in punk patches, and it smelled pretty bad. IMG_0009 We sang in touring choir together (I can’t remember why I joined in the first place, I was a constant troublemaker and foil to our director’s attempts at order). We got to know each other on a weeklong school trip to a monastery in Massachusetts. There may have even been a graduation day picture taken of us; who knows, it was 20 years ago.

In college, we became best friends, and quickly, via this new technology called “E-Mail”. I was going to school in the middle of nowhere Kansas and she was in the mountains of Virginia. Almost every day saw me drudging across the small but cold campus to the computer lab and hoping to get another intriguing response to whatever thread we had started. The conversations opened my mind to new ideas as well as a Deborah I never thought I’d know. One time I expressed shock over her use of the word “fuck” in an email. That was my word! Not hers! This email friendship came to a head when I️ decided to transfer to Eastern Mennonite University before the start of my junior year of undergrad.

Deborah and I had a standing lunch on Thursday afternoons during the fall of 2000. She continued to teach me things in such a calm and loving way. We would talk about my burgeoning mental illness, theological debates over issues such as the LGBTQ community (I was a theology major), philosophical debates over whether a soul exists or not (I was also a philosophy major), and we would talk about the state of social justice in the world (we were both also social justice majors). Our time in college watered the seeds of our friendship, and although we ran in quite different circles most of the time, I considered Deborah one of my best friends, and certainly the only one who was truly reliable.IMG_0008 We graduated college and Deborah moved to Philadelphia, whereas I settled in Lancaster, PA, a smallish burg about an hour west of the urban sprawl of Philly. Lots of friends moved to Philly, so needless to say I was there pretty much every weekend, trying to extend the college experience. Surprisingly, I saw Deborah very little during these visits since I was still caught up in a party lifestyle where my Philly priorities were about seeing Phillies games and getting as drunk as possible on Neighborhood Specials (if you know what it is, you know what it does). This practice changed with the death of my uncle.

When he died Deborah stood right beside me. Every friend I️ had in Philadelphia at the time was there for me, but Deborah stands out. She sat on her stoop with me for hours as I cried, she rubbed my back softly to let me know she was there and was a comfort. Deborah eased those days until they passed. Then her tragedy struck, and I felt unable to reciprocate the comfort due to my own mental illness finally showing its full strength.

Deborah’s father died in 2005 from cancer. Deborah had been living with her parents, acting as a caretaker until he passed in July. Not much for crowds, I️ stuck to the back of the hall where his memorial was going on and sent my love and care to the front row where my best friend sat. I️ wish my personality allowed for me to have been right in the thick of it, but no. And by July of the following year, I️ would be 2000 miles away.

Deborah was the first friend to visit Albuquerque after I moved here in 2007. She came to see me because I’d had my first major mental health episode a month or so prior to the visit, and she wanted to come out and be there for me. I️t was the first time someone had sacrificed their own desires, money, and time to help me through what was shaping up to be a storm that would engulf my life in the years to come. A storm Deborah would weather with me. IMG_0034 Deborah came to visit a couple more times on happier occasions. During those times I️ was engaged to a woman and the relationship was anything but healthy. After this woman and I️ split, Deborah and I️ spent at least an hour a day on the phone with each other in the summer of 2010. She made plans to come visit me for Thanksgiving, and we made plans to meet each other in San Francisco when I️ was going up there to explore graduate study in transpersonal psychology. This particular trip was colored by a very specific email exchange a few weeks prior to.

See, Deborah and I️ have always had a lot in common, but our pasts have shown major differences as well. I️ was the party guy. I️ thought this was my authentic self: gregarious, outgoing, extroverted, loves to drink and yell and cause a scene. Loves to be the center of attention. In actuality, I️ became those things because I️ thought it was what everyone else wanted me to be. This fake personality was driven deeper as people expected me to act this way. Who was I️ to step out of their pigeonholes For someone with neurological concerns effecting my social skills, I️ was being rewarded for the behavior and it cemented itself within my locus of control for quite some time. Deborah, who was never a teetotaler, was much more subdued (this is not to say Deborah didn’t enjoy going to parties). This main difference caused a bit of a schism in our friendship, seeming to confine it to more sanguine times.

During the summer of 2010, I️ feel I️ grew into myself. I️ grew up, I️ became what I️ was meant to be. Deborah was on the phone with me every night, listening in as this process took hold. For someone who is not neuro-typical, it takes a longer time to find one’s self. I️t certainly was the case with me. But as I found myself, I also found someone else. Slowly, my attraction to Deborah, both physically and as someone who would be a life partner, grew.

Deborah began coyly approaching the subject of pursuing a romantic relationship early in 2011 during a trip I️ took back east to see friends. Me, being mostly oblivious to people tones of voice, expressions, and passive expressions, had no clue she was putting out a feeler. She sent me a not-so-coy email not long after, explicitly talking about exploring a relationship with me. I️ sure panicked. Here was my best friend, the only one I’ve ever felt I️ could rely on, asking me if I’d be interested in a romantic relationship after all these years. I️t scared me: I’d never been in a healthy relationship. I️ had no idea what it would look like or how I️ was supposed to act. I️ responded in kind with a full-blown rejection email, refusing to discuss this issue, because I thought a romantic relationship would elimnitate a friendship I so greatly needed.IMG_1732 Now we’re in San Francisco, spring 2011, a few weeks following the email exchange. Deborah was visibly upset and I couldn’t understand why. Now, 6 years later and armed with a greater understanding of my neurology and the effect it has on my social skills, I know why it was so confusing. We actually had a good time on the trip, but looking back, it should’ve and could’ve been so much better. I remember flying home confused, because I did love Deborah, and I did see a future for us.

Fast forward a month or so, I completely fall into one of the top five meltdowns I’ve ever experienced. I ended up in the hospital due to coming very close to dying by suicide, and my father came to “assist” me with reintegration. Needless to say, this was a bad move. My disparate relationship with my father meant he had no idea what was going on and how to treat it. When he left I was still actively suicidal, afraid I was going back to the hospital. Deborah called. “Do you need me out there now that your dad is gone?” I’ve never answered something with more surety: “Yes.”

When I picked her up at the airport not long after, I saw her, we embraced, I cried, and I immediately knew I was in love with her, and the dark cloud enshrouding my brain immediately lifted. Once we got to my meager South Valley house and started drinking a little scotch and looking at old pictures… well… nature took its course. From the moment her lips touched mine I knew we would be together forever, and I knew this woman would stand by me and lift me up when I couldn’t walk on my own. As we lay there, our first night as a “couple”, something was said between us, and while I can’t think of the exact words the sentiment is clear as day: “So I guess this is it, this is our lives. I love you.” After almost a year of long-distance dating, she moved to Albuquerque and we were married. This is where the real story starts.

My mental health and the composition of my neurology makes life difficult for both of us. Deborah has to watch me suffer in ways my friends, fans, and readers have no clue about. She was watched me destroy as well as create. She’s seen me going to a treatment center and made the weekly visits, including having Thanksgiving there in 2014. She’s flown across the country, taken buses to rescue me when tours have fallen apart and I’m stuck having a nervous breakdown in some state across the country. She holds me when I’ve completely lost all sense of reality. She works from home when I’m actively suicidal to watch over me so I don’t do something we’ll all regret. She is a balm to my ever-deepening wounds.IMG_0010 I’m grateful for my wife, my lover, my best friend, my defender, my rescuer, my balm: Deborah.

And you should be, too. Your friend Russ would be dead if not for her.

Me, Too: Afterward

/ Russell James / 1 Comment

TW: Sexual abuse and assault.

It’s been a month since I published my post detailing my story of sexual abuse, assault, and the misguided efforts to corral my emotional disturbance. The response was overwhelming: literally, thousands of people read the post, most of whom I don’t know. Hundreds of people commented on Facebook, again a good many of whom I do not know. The remarks were securely supportive. Before the end of the first day, I realized I needed to write a follow-up post about the experience of disclosure.

I did not wake up the morning I wrote and published the post thinking it would take over my week. I finished writing it, read it aloud to my wife, and commented, “You know, I think a hundred people might read this.” I shared it on Facebook and within thirty minutes my prediction came true. As I watched the views of the post tick upwards, and a number of comments and shares it was getting on Facebook followed, I became a bit uncomfortable. It was happening very quickly. By noon the number had jumped to 500. By evening it was over 1,000. The comments posted on Facebook were drawing tears from my eyes the whole day. By the time I went to bed the uncomfortable feeling had changed.

An old friend who had her own experience with a high-profile disclosure of sexual assault sent this comment to me: “That weight. It’s a story we carry day to day but don’t realize how much heavier it got until we released it. Then the words from strangers come in and lift you so much higher you feel like you’re floating. Enjoy this…” I awoke with this thought the following day and held it very close, observing the feeling of lightness, the feeling of a dark burden lifting. The comments and views kept ramping up steadily, and the feeling of weightlessness continued into the night and I slept dreamlessly and without interruption. It was a new feeling, a difficult one to understand.

By disclosing our trauma and shining a light on the darkest corners in the closet of our minds we take the power away from the shadows. That which is of the night cannot live in the light of day. The floating feeling is what happens when the power returns. Think of it like this: if you hold a 50-lb. dumbbell for 25 minutes straight, then put it down and pick up a glass of water it will feel like you are holding air. This is my experience of disclosure. This is the impetus for growth.

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Let some light in.

 

Posttraumatic growth is the term used to describe the emotional resilience of an individual when he or she survives a traumatic event. Generally speaking, those of us who have experienced trauma come out better off on the other side. It’s a very difficult idea to grasp: these awful experiences make me a better person. It’s hard because all I want is to be “normal” or “neuro-typical”. All I want in this world is to have lived a life where I’m not tormented by this terror. To reframe the trauma as a stimulus for emotional growth, as something positive, has been outside of my skillset. The dark pain takes over, throws scales on your eyes, and puts out any light beginning to shine.

I studied posttraumatic growth formally while in graduate school. I applied these techniques in my own practice as a psychotherapist. All the while a constant question rings in my head: What about me? Where’s my growth? Why is this not happening to me? I was doing everything right: meditation, going to counseling myself, doing EMDR (look it up), keeping up my psychiatry appointments. I was following the instructions but it wasn’t turning my way. In fact, things seemed to be getting worse. My depression would linger for months on end, not giving an inch or a minute of relief. For years this has been my story, for decades this has been my path. No respite, no growth, just regression, and decompensation.

For me, the stalwart walls my trauma had erected fell before the might of revelation. Posttraumatic growth is no longer an impossibility; it now feels inevitable. Strength and power, long since forgotten and abandoned, came roaring back in torrents. All of this by the end of the second day following my post. When I awoke on the third day I checked the views and comments: they were still coming in and piling up. Throughout the day I noticed I was checking obsessively.

As a person who has been diagnosed with obsessive-compulsive disorder (caveat: don’t trust mental health diagnoses) I know I run the risk of turning anything I do into a compulsion, and this is exactly what happened on the third day. I was addicted to the comfort my community was providing. There was a large void in my life and the supportive comments, texts, and messages from both complete strangers and old friends were rapidly filling it. It makes sense a compulsion would develop. By the end of the third day, I was quite aware and disturbed by it. So, I did what we all should do every once in a while: I unplugged.

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Long walks, gathering wood with my wife and our best buddies. Jemez Mts, New Mexico.

 

I spent the weekend camping with my wife, our dogs, and one of our closest friends. No reception, only brisk mornings, long walks with the dogs and the love of my life, and campfire’s crackle to shepherd me into sleep. It broke the compulsion. By the time I returned home some of the furor had died down (although it wouldn’t come to a complete standstill for another couple weeks). I was overcome by a desperate feeling: OK, what next?

The depression returned the week following the post and I believe it had a lot to do with coming down from the mountain. I saw from a new perspective, I was given something long denied me, I was comforted, and I was victorious, but now I was on the descent. The comments had slowed to a trickle and I was having some serious withdrawal.

I’m still dealing with the depression right now. While it hasn’t magically disappeared, it feels different. It feels finite. My psychiatrist remarked, “I think you’re on the back end of this thing,” during a visit a couple weeks ago. This is a man who has been seeing me for 12 years, treating my depression and strategizing time and time again how to cope with it. To hear him say those words meant the world to me because he wasn’t lying. I feel it. It’s incredible to have a ray of light shine through the darkness. In time, more light will break through. It’s all happening.

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A much different picture than a month ago. (PC: Sara Lazio)

 

Now we’re a month out from the post. I’ve been putting this one off for some reasons, but I’m glad it’s finished. Another beam of light will come from it. I know I won’t lead a typical life, and I know my PTSD and its cousins, depression, and anxiety, are here to stay. But I know I can make a life in spite of them. I can live with them. In time, I may finally actualize what I’ve been thinking for a decade now: I’m a better person because of them. This is a big mountain, but I’m definitely in training for it.

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Oh, Big Mountain. I’m gonna climb.

 

(dis)Abled

/ Russell James / 1 Comment

I’m driving north out of Cincinnati towards the Indiana state line. The Midwestern sky is polluted with clouds that look like pot-bellied stoves long in use, charred and bowling around, hanging low and threatening. The temperature outside reads 93 degrees and the humidity percentage must be close to matching that number. Inside The Gray Haven, my mind is steadily unraveling: deteriorating into a salad of nonsensical, horrifying thoughts that play on repeat. My brain starts to resemble those black-bellied clouds overhead. No rain will fall to relieve me of the darkness.

“I wish I was dead.” “I should drive my car into oncoming traffic.” “I’m a drain and I’m better off dead.” “All I do is cost money and cause problems.” “I should just die.” These are the statements that run through my head once the pain of depression and the stab of anxiety take over my day, and they are too often accompanied by horrific images of self-harm. There’s a huge difference between having these thoughts and images in my head and actually moving forward with death by suicide, but imagine what it’s like have these ideas and statements cycle through your thinking hour after hour and day after day. It’s the worst kind of exhaustion.

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Performing in NYC, depressed AF.

Driving and fighting these thoughts for hours on end pulls all the energy out of me and I end up with nothing left to give. Just like when I was working as a psychotherapist, I end up calling in sick because I can’t muster what it takes to get the job done. Except that “calling in sick” now means that I have to cancel a gig, which takes a lot more courage than leaving a voicemail on my boss’s phone. There’s a good reason for this: I’ve never felt like I have more to give than when I’m singing and playing guitar. The thought of being unable to give what I have is almost unbearable. I’ve written before about how music is the only job I can hold down, but it is obvious music isn’t immune to the thorns of my disability.

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Something to give: Playing music for an old friend recovering from a heart transplant while traveling through PA last week. I’m grateful for these opportunities.

And there you go: I put it out there with one short sentence. I’m disabled. That’s the official classification and it’s a much more bitter pill to swallow than any of the pills populating the expansive case in my toiletry bag. I’ve been thinking a lot about my disability on this tour, probably because I feel it’s affect resting heavily on my shoulders. The weight is shame, and it compounds on itself with every passing moment. I am ashamed of myself for my disability.

I held an important conversation with a close friend at the beginning of this tour. This friend is an expert disability scholar and helped me understand the shame I feel towards myself, and the root of the disturbing self-talk that plagues me. I began to understand that I feel a self-loathing because I am not “normal”. Something she and my wife have been able to train my mind on is that “normal” is a misnomer, and my shame is a byproduct of society, not my disability.

Our society has an astonishingly limited view of functionality and worth. Worth is often measured in financial success or notoriety in one’s field. We have been trained to think that if we don’t have one or the other of these two things we are insignificant to the rest of the world. As a result of this training, our world has been constructed in a utilitarian fashion to benefit and serve those who fit the status quo. If you are outside of the ring of normalcy you tend to get left behind. Society turns on those who do not fit in, and as a result, I have turned on myself.

I hate who I am not because I hate the experience of depression and anxiety; I hate who I am because I feel I am less than those of you who are not shut out of life due to a disability. This is wholly incorrect, yet it lay at the root of my entire way of being. It’s been cemented deep within my core beliefs over years and years of mortar applications from society, media, friends, and family. No one means to entomb me with my dark cask of amontillado, but it’s happening just the same. Even the term “disabled” itself has connotations that I’m not whole, that I’m unable to be whole.

“Disability” is unfair, and I think the key lies in dissecting that word. It means that I’m unable to do something, which is true. But the effects of the word are further reaching than that: the societal meaning is closer to “I can’t do anything for myself” than the latter. This is untrue. I’m incredibly able to write, think, and feel. I’m able to play guitar, sing songs, and perform them in front of people. There are times when I’m not able to do that, like last night, but that doesn’t mean I’m unable to do them altogether. Hardly the truth. I’m able to do these things when I’m able to, and that has to be ok.

The world doesn’t work for me and folks like me, so I have to navigate it in a different way. There are times when people don’t understand this and it will repair any of the cement that I’m able to slowly chip away. I don’t think it’ my lot to be free from this, so this is a lifetime work. I just hope that someday I can see myself with the compassion, understanding, and love that others see me with.

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