This Is What Disabled Looks Like: Living With An Invisible Disability


Angela Clarke is a crime novelist, who also happens to have an invisible disability. Today, on Writer’s Blog, I wanted to share this important article she has written to highlight the plight being suffered by many people who also have disabilities that you cannot obviously see. Let it serve as a reminder that we should not judge a book by its cover!

The young woman twiddled her Edinburgh Festival staff lanyard and gave a loud, frustrated sigh. She was no more than 21, we were three-quarters into the August arts festival that colonises Scotland’s capital annually, and I could tell she’d had enough of unreasonable requests. Except I hadn’t made one.

Arriving to see a play based on Jurassic Park (if you don’t know the Edinburgh Festival, this is towards the normal end of the programme), I’d discovered the venue was up five flights of stairs. It happens. There are over 10,000 performers sprawling across the capital and it’s impossible to research every venue when you’re packing in five shows a day. No biggie, I just asked if there was a lift.”There is, but I’ll have to ask if you can use it,” the woman replied, before speaking into her walkie-talkie. “Wait here. I’ve called for the manager,” she added.Time ticked towards curtain up, and my friends were looking nervous.

“Can I just go in and use the lift myself?” I said hopefully.

The girl scowled at me.

I told my friends to go. My husband waited with me.

“Is anyone actually coming?” I asked the girl again.

“The disabled entrance opens directly onto the stage,” she replied as if in answer.

With a minute ’til the show started, I sent my husband running up the stairs to catch it. My door guard was still huffing and puffing. I knew what was coming. I’d had this before. Her whole reaction had been as if I were asking for something outrageous. With a triumphant look, she said, “You’ve missed the show. No late admittance.”

“I’d still like to speak to the manager,” I said, feeling myself blush. Alone on the street, I didn’t feel so confident asking for my rights.She gave me a long look up and down. I’m 35. I was wearing Zara denim cut-offs and a Marc Jacobs jumper (sale bargain). My hair is highlighted, and I’d blow-dried it. I wasn’t wearing much makeup but my nails were gel manicured. She thought I was a diva. A Mariah Carey wannabe who didn’t do stairs. Some kind of blagger. She raised an eyebrow and with pointed emphasis said, “Can I ask exactly what is wrong with you?”And I felt sorry for her. “I have a degenerative connective tissue disorder that, among other things, means I injure and dislocate easily, and my mobility is compromised. I find stairs very difficult.”


The moment the word ‘degenerative’ came out of my mouth, her face fell. She was mortified. She’d made a wrong assumption about me. She was young, she didn’t know better. It’s possible she’d never met anyone like me. Or more likely she had, and never realised. I am one of the 11 million people in the UK estimated to be living with a limiting long-term illness, impairment or disability. There are no statistics on how many of those 11 million have an invisible condition – the term used to describe a wide spectrum of hidden disabilities or challenges that are primarily neurological in nature. But based on similar data studies carried out in the US, we could estimate that 74% of those who live with severe disability do not use either a wheelchair, a walking stick or a cane. In other words, they, like me, often don’t have a visual “tell” that they are disabled. And that is at odds with what many people think someone with a disability looks like.

The Edinburgh Festival worker wasn’t the first to treat me as if I were trying to cheat the system. It happens all the time. Just a few weeks ago, a barman refused to give me a key for the disabled toilet unless I produced medical proof and history in front of a packed pub. (Seriously, who thinks blagging a ride in a lift and having a go in an accessible toilet is a winning scam?) People may think they’re doing a good thing – protecting services for those who they believe truly are disabled – but it’s time for greater awareness. It’s humiliating to have to share personal information just so you can pee. It marks you out as ‘other’. People look at you differently. You quickly become someone to pity, when all you wanted was a glass of wine and a whizz. Able-bodied people aren’t required to give intimate details about their health in front of strangers. Why should I have to justify my need to use a disabled bathroom or the lift? If someone has gone to the bother of queuing at a bar to ask for a disabled toilet key, as opposed to just nipping downstairs to the main toilets, chances are there’s a reason. You shouldn’t be made to feel as if you’re taking the piss when you’re simply trying to go for one.


As disability cuts are rolled out, and politicians talk in the rhetoric of “strivers” and “skivers”, there’s an increasing sense that those with disabilities are only ever a drain on society. In 2015, an open letter from Sam Cleasby to a woman who tutted at her using a disabled toilet went viral. Sam is a glamorous 33-year-old who suffers from the invisible condition ulcerative colitis and wears a j-pouch bag that collects faecal matter. In the same year, Corinna Skorpenske’s online response to this note left on her car went viral: “You should be ashamed!! When you take a handicap spot an actual disabled person suffers!” Corinna was with her 16-year-old daughter, who has the invisible but debilitating and painful condition lupus, which severely restricts her mobility. This was the third anonymous note Corinna had received.

Anyone with an invisible condition will recognise this attitude all too well. The reason the Edinburgh Festival worker couldn’t get her head round me being disabled is the same reason why people doubted Sam Cleasby, Corinna Skorpenske’s daughter and countless other sufferers of invisible conditions across the country. People expect those who are disabled to look like victims. Newsflash: disabled people aren’t some Dickensian throwback stereotype. We’re clean, we take pride in our appearance, we also like going out for a drink and a laugh. We have careers, deadlines, lives, loves, and family. We look just like you. Living with an invisible disability throws up enough challenges; don’t let your attitude be one of them.


Angela Clarke’s new book Trust Me is out now. You can get your copy here.


It’s Not What You Think | The First Ten Words by Rich Larson

On Writer’s Blog today, we take a little break from writing – as this is such a good, well written post, and is so relevant to what I was saying in my post earlier in the week on Writing and Depression – that I had to share it. I hope you find it an interesting, thought provoking, and emotional read, as I did.

Chris Cornell died early Thursday morning. His band Soundgarden played a show on Wednesday night at the Fox Theater in Detroit. Two hours after the show ended, he was gone.

For two days, I’ve been working on a piece to pay tribute to him, and it’s been a struggle. Usually when I have a problem like this it’s because I’m staring at a blank screen trying to figure out what I want to say. That’s not the problem this time. The problem is I have way too much to say.

I’m not going to sit here and claim to have been a huge fan of Soundgarden. I didn’t dislike them, I just had to take them in small doses. I was a fan of Cornell. I love “Seasons,” the solo song he had on Cameron Crowe’s movie, Singles. It’s a droning acoustic song about isolation and the meaningless passing of time. Your basic nihilistic statement written at what was probably the peak of rock’s most nihilistic period.

I was a fan of Cornell as a person. Of all the great musicians that were packed into Seattle in the late 80’s and early 90’s, from Mark Arm of Mudhoney to Jeff Ament of Mother Love Bone and Pearl Jam to the Great Tortured Genius himself, Kurt Cobain, Cornell seemed like he rose a little bit above the others. He was the unofficial communicator of the Seattle scene. Like a Pacific Northwest Sinatra, he had a charisma and a calm grace about him. He was thoughtful, even charming, in interviews, unlike his compatriots who disdained fame and accolades (or at least pretended to). Cornell was the guy who seemed most like he could handle all the attention without turning it into an existential crisis.

Now he’s dead because, as it turns out, he had been dealing with an existential crisis most of his life. I was a fan, and I had a ton of respect for him. But it’s taken me a little while to understand why his death has affected me as strongly as it has.

At first I thought it might have something to do with the fact that I was mostly a bystander while the music of my generation was taking over. Just as Nirvana and Pearl Jam were making that gigantic breakthrough in 1992, my fiancé and I discovered we were pregnant. So instead of investigating mosh pits at the 7thStreet Entry, or watching Soundgarden and Pearl Jam rule the stage at Lollapalooza (it was a traveling festival in those days), I was hastily throwing together a wedding and then changing diapers. My wife and I got an early jump on things, so we’ve always told ourselves that we’d make up for lost time in our forties and fifties.

Well here we are, and something like this just makes it feel like we’ve arrived too late. But while that’s a legitimate thing, I don’t really think that’s exactly what is bothering me.

Then I thought maybe it’s a generational thing. Grunge is the gift that Generation X gave to the world of music. We took all that slacker cynicism, mixed it up with our older siblings’ sneering punk attitude, Zeppelin’s low end and, if we’re being honest, a little heroin. The result was the musical version of Beckett’s Waiting for Godot. It was gorgeous art that was absolutely sure that nothing really matters, making it feel immediate and important. It was the sound of a generation telling everybody, including ourselves, to fuck off.

And while we were wallowing in our splendid alienation, our spokespeople, predictably, started dying. First it was Andrew Wood of Mother Love Bone. A lot of us didn’t know about him until Cornell, along with Wood’s erstwhile bandmates (who were about to form Pearl Jam) memorialized him with a one off tribute called Temple of the Dog. Somehow, Wood’s story made death part our music’s romantic foundation.

A couple years later, Cobain killed himself with a shotgun. He was 27. Our Bob Dylan, the voice of our generation, threw it all away because he was afraid he was becoming a cliché. At least, that’s what we told ourselves at the time.

Shortly thereafter, Kristen Pfaff of Hole overdosed and died in a bathtub. And then Shannon Hoon of Blind Melon overdosed and died on a tour bus. It felt like people like D’arcy Wretzky of Smashing Pumpkins, Scott Weiland of Stone Temple Pilots, and, perhaps especially, Courtney Love – Pfaff’s bandmate and Cobain’s widow – were all headed in the same direction.

Alice in Chains’ Layne Staley died of a gruesome overdose. The fact that his body was not discovered for more than a week felt somehow fitting. He was a emblematic of a generation that just wanted to be left alone.

And just when it felt like our music, and maybe our entire generation, would never live to see 30, things turned around. Love and Weiland cleaned their acts up (at least for a while). Bands like Pearl Jam thrived long after the term “Heroin Chic” disappeared. Before we knew it, we were a decade into a new century and a lot of the Poets of Grunge were still standing. Some of them were even in the Rock and Roll Hall of Fame. It felt like our heroes were out of the woods.

When Weiland died of an overdose of cocaine, alcohol and MDA at the end of 2015, it felt like an echo, and not something rooted in the present. He had become the most notorious addict of them all over the years; in and out of rehab so many times we had all lost hope for him. His death was something that had been predicted so often for so long that it might as well have happened in 1997.

But Chris Cornell died of suicide on May 17, 2017, at the age of 52. He was a dad. He was a philanthropist. He was becoming an elder statesman of rock. He was a grown up. Cornell was aging gracefully, even doing that thing where some guys get better looking as they get older. He got Soundgarden back together, and they made a great new album a couple years ago. His voice still had all the power and strength it had displayed in his youth. Much like the rest of us, the world had kicked his ass a couple times, and he survived.

But now he’s gone, and goddammit, his is the death that bothers me the most. As I’ve been thinking about this, I’m realizing that it’s both a personal and a generational thing. Cornell had a long struggle with depression. As have I. As have many of you.

It’s possible that, along with grunge, Generation X’s other great gift to society is depression. I mean, of course it was here long before the Baby Boomers started re-producing, but we talk about it more than those who came before us. We talk about it as a demon or a monster. It’s a dark shadow that shows itself at any point in time without warning. It surrounds us, isolates us, and quiets us. Depression likes to blame things. We feel like shit because of mistakes we have made in life or because of the state of the world or because we aren’t perfect. Without a lot of help and a lot of work, it’s impossible to know that it really is a chemical imbalance in our brains. After twenty-plus years of trying to de-stigmatize depression, some of us still have a hard time recognizing it for what it is. And even then, it doesn’t always matter.

You might think grunge is about anger, but that’s not completely true. Yes, it can sound that way, but it’s really about depression and cynicism. Those two go hand-in-hand, along with their nasty little sister, anxiety. When the three of them get going, they just eat hope as quickly as it can be summoned. That leaves despair and despair is exhausting, not just for those who experience it, but for the people around it as well. So we keep it to ourselves because we don’t want to be a burden. And then it gets to be too much. Doesn’t matter if you’re a student, a mom, an accountant or a rock star. It doesn’t matter if you’ve written about it your entire life as a means of keeping it at bay. It doesn’t matter if the music you made about it brought in fame, respect and millions of dollars. It doesn’t matter if your entire generation has suffered from it. Depression makes you feel totally alone. You hit the breaking point, and then, like Chris Cornell, you die alone in the bathroom.

This was a well-respected member of his community; a beloved musical hero who seemed to have it all together. This could have been any of us. And brothers and sisters, if it’s you, don’t mess around with it. Please find some help.

Cornell is speaking to us all one last time. This isn’t something we left behind with our twenties. This isn’t something cured by age or financial security. This isn’t something you “outgrow.” If it’s allowed to fester, depression is stronger than wisdom. Depression is insidious and tenacious. Depression can get to anybody. It can make you feel like an old man at 27. It can make you feel lost as a child at 52.

Call it a senseless tragedy. Call it a second-act cautionary tale. Call it whatever you want. Just don’t blow it off as meaningless.

Rest in peace, Chris.

Via: It’s Not What You Think | The First Ten Words by Rich Larson

Why aren’t lesbians anyone’s gay BFF?

“This is my gay bestie,” a new acquaintance chirps, pulling forward her homosexual arm candy with the same proud smile one might use to present a great prize. It’s a phrase I hear often in one form of another from almost every straight girl I know. Now that we’re on the winning side of the culture war, gays are faced with a funny phenomena: where once we were shunned, now we are fetishized.

I suppose it’s an improvement, but it’s not equality. How straight people objectify gays is different for women and men: gay men are treated as glittery accessories for any straight girl worth her clutch; lesbians are objectified as non threatening fuck puppets for straight male consumption and ejaculation. Neither role puts emphasis on our humanity, just our utility. It’s like once the mainstream stops wanting to destroy something, they start wanting to possess it. And we, the rainbow-tinged masses, are now in the very strange position of being in demand not for who we are but what we represent.

The modern woman doesn’t just need to have a black friend to be cool; she needs a gay friend to tell her how FIERCE she is. And lucky for her, gays seem far less threatening to white heteros than blacks. So unthreatening straights feel comfortable, nay entitled, to treat and refer to gay people as objects well within earshot. Frankly sometimes I wish straight people were a little more afraid of gays. It would make them less annoying. The role of GAY BFF has fallen squarely on the shoulders of gay men, not gay women. I’m super glad about that, but I still can’t help but wonder why? Why does the term “gay BFF” seem to apply only to men?

Original Cindy: Dark Angel‘s Lesbian BFF


I suspect there are several reasons that friendship with a lesbian isn’t prized as highly as friendship with a gay man. First, the obvious: gay men are sexually unthreatening. Since lesbians by definition are attracted to other women, straight women might feel less comfortable around us. That reasoning, while flawed, is still acceptable.

As lesbians, we know perhaps more than anyone how traumatic and uncomfortable attention from straight men can feel; I could never begrudge straight women for not wanting to be hit on by women. That being said, HELLO, honey, like you could get this. Lesbians do sexualize women; it’s fun! However we also share the female experience and are much less likely to put unwanted sexual attention or pressure on straight women than men. Most straight girls I know are pretty chill about the “lesbian thing” but once and awhile I tell a girl I’m gay and she defensively retracts, emphasizing “I’M NOT” as quickly as possible lest I fall for her incomparable charms. My favorite response to that is “Relax I’m only into model types,” which you can totally use if you like. But I digress!

The second reason lesbians aren’t seen as Gay BFF material is that lesbians are stereotypically perceived as being overly masculine, while gay men are seen as overly feminine. And a lot of lesbians do present themselves in a “manly” way (by straight people standards) or possess traits like independence or assertiveness that are traditionally and incorrectly connected with masculinity. But that doesn’t make us straight guy wannabes, and it sure as hell doesn’t mean we can’t appreciate a good sale.

Before I came out, I was very much a girl’s girl. I’m still a girl’s girl, but it’s different to be a girl’s girl when you like girls because you’re no longer exactly one of the girls. I’m not going to commiserate about how CONFUSING men are (they seem pretty simple to me) or how HARD it is to find the right man (how could it be so hard there’s an insane amount of them). We can’t all go to the club and mack on cuties because my kind of cutie has a booty and hangs out at a different club (those gay clubs straight girls go to when they just want to DANCE and be worshiped like in Sex and the City). Before I came out, I didn’t notice how important men are to female friendships. Now I feel like a walking Bechdel test, and no one likes a test.

Leslie Shay is Dawson’s LBFF/Dawson is Shay’s Straight BFF on Chicago Fire

The third and final reason lesbians aren’t in demand as gay men for the role of dazzling arm adornment is simple; lesbians aren’t perceived as being very much fun. Unless we’re having sex with each other and therefore catering to the male gaze, our utility is diminished. We’re man-hating uber feminists who secretly want to be men. We exclusively wear plaid and Kmart jeans. Our sole means of entertainment is playing with our dozens and dozens of felines. Basically, by rejecting the odious embrace of men, we’ve been cast in the role of “miserable spinster” by a society that prizes male attention above all other.

This is unfortunate, because the lesbians I know get rowdy. We drink, we smoke, we have awesome hair, our clothes are carefully curated to express that certain je ne sais quoi that will lure women to our side. The lesbians I know bare little resemblance to the haggard debs looming large in the minds of American culture. We’re not accessories, but we’re still treated as two-dimensional objects rather than complex individuals in our own right.

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A triumph and tragedy for Women’s History

Having a passion for women’s history, this story brings a tear to my eye for a few reasons…

It demonstrates how one person can change the world, shows the bravery people can have in spite of the terrible consequences, shows human warmth and compassion in immeasurable depth, and sadly, the corrupt and ridiculous nature of power and politics in this world…