Thursday, 20 October 2016

Dear Able People: An Ableism Primer

Dear Able People:
An Ableism Primer
by E. Amato

Being differently abled can be a minefield. Daily life activities can be filled with frustration, fear, loneliness, pain, adaptation, challenge, and/or plain impossibility. To get through the day, people with ability issues need persistence, patience, flexibility and focus – many of which tend to be in short supply due to illness, chronic pain, mental health issues, and injury.

Still, life goes on, and people with ability challenges do remarkable things. Though blinded in a shooting incident in his twenties, theatre artist Lynn Manning toured shows around the world. Stephen Hawking has changed humanity’s conception of the universe from a wheelchair with a voice simulator. In London in 2012, a Paralympian zoomed past me on prosthetic legs.

Differently abled people find ways to get through the day, to become new selves, to express their gifts, and to thrive in circumstances that would make many people want to give up. This is what life should be – a journey of purpose to happiness, despite the odds and challenges on the path.

What life shouldn’t be is degrading, shaming, shunning, penalizing, and punishing. Yet every day, people who are differently abled face these in varying degrees. From micro-aggressions through job discrimination, able-bodied people bring consequences to disability that don’t have to be there.

We call this “ableism.”

We find it both harmful and unnecessary.

Perhaps you haven’t realized that this problem exists or know how it manifests. Here’s a quick overview of the problem, some of the issues, and some fixes.

1. What is ableism?

Ableism is the practice of assigning less value to persons who have disabilities.

Ableism can take many forms, including hurtful speech, denigration, rendering invisible or unseen, or not taking practical needs and parameters into account.  

Ableism can be as small a gesture as side-eye to the life-damaging hiring discrimination. It removes agency from individuals.

Ableism can be unconscious; for example, making assumptions about ability, capability, and mobility without creating an environment that allows for people of different levels of ability.

Ableism can take the form of the enforcement of “normal,” while discrediting those who fall outside this arbitrary assignation.

2. What is disability?

Disability is any state of not being 100% healthy in body and mind. It can be temporary, chronic, permanent, or, in some cases, terminal. It can be related to an illness or debilitating treatment or side effects from medication. It can be the result of an accident or injury. It can be the loss of physical mobility or the use of senses such as sight and hearing. It can be related to psychological health or an autoimmune condition. It can be any combination of the previously mentioned conditions. It may or may not be visible to you.

3. What is invisible disability?

So glad you asked! Not all disabilities are visually evident. Let me state this again: notall disabilities are visually evident. This is so important. People suffer from many types of illnesses, diseases, injuries and mental health conditions. Not all of these require wheelchair, cane or crutches. Not all of them are on display.

This does not mean the person you are looking at, who is able on the outside, is actually able. If they have requested assistance, if they are parking in a handicapped spot and have a handicapped placard, then they are handicapped as far as you are concerned. They don’t need to be questioned by you or reminded that it’s a handicapped parking space. They don’t owe you an explanation. They could have hearing problems, they could have a condition like lupus or fibromyalgia that can render movement painful. They could have a serious mental health issue. They could have a brain condition that makes balance difficult.

It doesn’t matter -- none of the above matters. What matters, is that they are not able, even if their disability is not visible to you. What matters is that it’s their body, which they live in and know intimately. They do not need to share their body and its processes with you if you are not their practitioner, caregiver, or very best friend in the world.

They do not need to be shamed, punished or penalized for their appearance of health. They are struggling. If you are making their way in the world harder, then you are policing their behavior and needs, which is no one’s place. Instead, try Plato’s advice: “Be kind, for everyone you meet is fighting a harder battle.”

4. What does ableism look like in the world?

In a fantastic open letter, Samantha Cleasby details a trip to the disabled bathroom marked by being “tutted” at by another woman. She is candid about her disability and her needs. Her medical condition essentially means she has no bowel. Cleasby still appears able – she is not in a wheelchair, she is able to run to the bathroom as soon as she realizes she is about to have a problem. These should be positives, but they leave her open to criticism, jeering, and even laughter.

Imagine this level of scrutiny every time you went to the bathroom outside your home. Now imagine living with pain, limitation, digestive issues, mess, anxiety about having accidents in public places, in addition to this level of scrutiny. It seems more than unfair – because it is.

A person who is differently abled may experience this type of encounter multiple times upon leaving his or her own home every day. The additional friction and tension of potentially difficult human interactions placed onto already overloaded physiological systems are unwelcome and can be damaging.

Most people who are differently abled learn to be up front about boundaries and limitations. This doesn’t mean they are going to tell you their health problems, but they will offer up what they can or cannot do when it’s applicable. Yet, this does not always produce the desired results. Refusing someone access to alternatives to stairs, or refusing to lower a bus when requested are ableist actions. Assuming that disabled people are lazy, rather than accepting that they are limited in certain areas, or in pain at that moment, or sometimes, or all the time is ableist.

Forcing people to beg in order to honor the limits of their own bodies, for your listening and understanding, or for you to give them what they need when it is completely within your power to do so is ableist. It is tiring to live with ability challenges; it is exhausting to continually explain, charm, cajole and plead for simple modifications.

Ableism looks like judging people by how you think they look, and what you think their level of ability should be – not what it actually is.

5. What does ableism look like in the workplace?

Ableism at work can include harassment, making jokes, and overlooking in favor of able colleagues. Ableism can take the form of not accommodating necessary modifications to workspaces or schedules for those who are differently abled.

Firing an employee while he or she is out on disability, or passing over those who have been ill or have struggled with mental health issues for promotions is ableist. Actions like these have major consequences on income, financial stability, and threaten consistency of access to health care.

Although the U.S. and other governments have strict codes and guidelines for persons with disabilities, these are not always fully honored, and the burden of proof is on the employee. In extreme situations of ableism, an employee will be forced to retain legal counsel and sue for his or her rights, either after termination, or while still maintaining a working relationship with colleagues and the employer. Suits like these are time consuming, anxiety producing, and draining. The multiple stresses to body and mind of unemployment, loss of income, harassment, loss of access to or increased cost of health coverage, added to the burdens that come with ability challenges can be devastating.

6. How can I help?

You are helping just by reading this! You are learning about ableism, disability, and its impact on lives – that’s very helpful.

You can help by not policing the behavior or stated needs of people with disabilities. You can help by accommodating those needs respectfully when possible. You can help by beginning a conversation around these issues with other able people.

You can help by listening to, learning and adopting the language used by the differently abled people you know. Alternately abled people have a variety of ways of referring to themselves and their condition. They usually settle on terms that give them the greatest agency. By accepting the language being used, you are reinforcing their personhood. When you choose other language, language that is debilitating or disempowering, you are overwriting the choices made by the person with whom you are interacting, which is tantamount to making them invisible, or infantilizing them. If you don’t know the proper language to use, ask. An open-ended, non-judgmental question is always welcome. It shows you are listening and you care. Be brave – the person you are talking with is, so you can be, too.

Finally, you can help by remembering that no one is infallible and everyone will have struggle or illness in their lifetime. Differently abled people are you, in a different body at a different time – treat them as you would love to be treated yourself if these were your circumstances.

…unapologetic feminist, dulcet-toned poet, activist, film-maker, editor of Zestyverse” (LossLit) E. Amato  is a published poet, award-winning screenwriter, and established performer. She has published three poetry collections through Zesty Pubs and is a freelance writer and editor, and a contributor to The Body Is Not an Apology. She got Marmite in her bag.

Thursday, 25 August 2016

Dear Able People: Creating A Relationship That Transcends Ability Issues by N.S. Lavay

Photo courtesy N.S. Lavay

Dear Able People:
Creating A Relationship That Transcends Ability Issues
by N.S. Lavay

What is it like being in a relationship with somebody who has severe mental health needs?

I think it’s probably a lot like any other relationship. We spend Sunday sitting on the couch watching Netflix and eating chips. We listen to crappy music together and debate the merits of
different brands of peanut butter at the grocery store.

We also have a very unique set of challenges.

My fiancée, who I call ‘Goose,’ has been diagnosed with chronic PTSD. This creates certain difficulties, but through our teamwork we’ve navigated these challenges and come out stronger. I’d never tell anybody I’m a relationship expert but we just set a date for our wedding; as a commitment-phobe who’s not running away screaming, I assume we’re doing something right.

It took time to figure out how to be a good partner, but I’m very glad I’ve had the luck to meet the incredible individuals who’ve helped me understand how crucial honesty, communication, respect and trust are in fostering a healthy relationship -- regardless of mental health. I recognize that it’s important to learn from my previous relationships. Critical reflection has helped me discover what I don’t want to put up with from others, and realize my own missteps as well.

In my first relationships, I found honesty and communication especially scary.  Goose is amazing at gently pushing me towards straightforward discourse and setting boundaries. Not too long ago, I was afraid to discuss my needs, but she’s shown me that it’s okay to tell her when she does something that annoys me, like stealing my  pajamas every night. It’s okay to confess that staying in for three weekends in a row is slowly eating at my soul. Being honest is good — I deserve warm pajamas in our cold apartment and I shouldn’t silently develop cabin fever.

Time has taught me that advocating for my needs creates openness between us. Being able to talk about little things which annoy me is practice for talking about the issues that scare us. If I can’t ask Goose to stop stealing my water, how can we talk about bigger issues such as our plan for a mental health crisis?

Trust has been an interesting issue for me. Most people think of cheating when the word ‘trust’ is thrown around, but for the first ten months of living together, I found myself adopting this horrible caretaker approach to our relationship. I made Goose’s lunches, did all the laundry and the grocery shopping, all because I wanted her to be happy and comfy. After a string of weekends on laying on the couch feeling grumpy and irritated, I realized that I didn’t trust in her ability to take care of herself, and this attitude led to burning out. I genuinely enjoy taking care of others regardless of ability, but when I’m stressed I forget to take care of myself. There’s nothing worse than feeling exhausted and emotionally drained, only to be hit with a mental health emergency. It’s important that I trust her to make the best decisions for herself, because when she does request my help, I want to be ready for when she needs me the most.

I won’t lie about the fact that PTSD influences our couple time.  We can’t go to the movies, ride the bus at night or go crowded places. While these are things I miss, it means we go on unique and thoughtful dates. We’ve gone to secluded beaches, mini golf, and hiked while holding hands. A therapist suggested we take a dance class so we could experience a safe way of being in a crowd. One of my favorite activities is picnicking at the park with a game of Scrabble. I’ve also found that these types of activities allow us to interact with each other, which is more difficult when one is plunked down in front of a screen or nursing a beer in a loud bar. This has helped me feel so much closer to my love.

If I want to do anything Goose feels uncomfortable doing, like going to bars or dancing, I save it for my friends. This means I get to explore the city I live in with my other favorite people, and have partner who feels safe and mentally balanced.

The PTSD directly influences date-night choices. It also influences our arguments. Goose navigates couples issues much better than I because she was lucky to have received the help she feels she needed. A variety of mental health experts helped her develop a set of tools to evaluate emotions and communicate during arguments. She’s able to ask critical questions needed during times when we don’t see eye-to-eye. Goose has the ability to stay grounded and ask, “Why are we arguing in this moment? What are we trying to accomplish with this argument? How are we feeling? What’s the appropriate way to talk about that?” She’s been an amazing example regarding communication during disagreements.  Thanks to my partner, we can find solutions without hurting each other’s feelings.  We usually come out of disputes feeling better about the issue at hand and even stronger as a couple.

Being with her can be challenging, but all relationships have their moments.  For me, it’s been about deciding whose issues I’m most willing to handle.The magnetic connection I felt during our first conversation has never gone away and every day I only feel more drawn to her. The swelling in my heart when I look into her gorgeous eyes always throws me off guard. I recently accidentally saw Goose in a wedding dress she was trying on, and the sight of it nearly knocked the breath out of me.

Everybody has problems, including able-bodied and neurotypical people. Regardless of ability or mental health needs, everybody has strengths and weaknesses. Mine work well with my fiance’s. The difficulties we face together are nothing compared to our determination to overcome them. I love her so fiercely that we’re willing to do whatever it takes to stick together. Goose attends therapy and engages in other activities to stay on top of her mental health, while I proactively eliminate triggers, or stay in with her on anxious nights. At the end of the day, I’m content from the time we spent together during the evening, and obsessively imagining the details of our wedding, which I bug her about as she attempts to fall asleep. Sometimes she asks me how I can put up with anxiety and avoidance of loud noises, but I always tell her it’s a very small price to pay if I want to watch crappy Netflix with her when we’re 105.

N.S. Lavay is an art historian and writer currently existing in San Francisco. Read more work here, or follow her on instagram.

Monday, 6 June 2016

Women You Should Know - Gina Psyliakou by Aradhana Kothari

Women You Should Know:
Gina Psyliakou
by Aradhana Kothari

I used to work for a service that offered support to disadvantaged and vulnerable young people. The difficulties with the job were the usual barriers - unsociable hours, insufficient budgets, infinite reserves of resilience needed, and the ability to withstand verbal abuse - that came hand in hand with working with young people who had been dealt the hard end of life. 

Standing in my office on an unremarkable day, a staff member comes into the room. Striding in slow motion, stopping with the superhero stance that befits her most recent actions. This woman has just achieved something outstanding. You know it; she knows it; everybody standing in this ridiculously small office knows it. But of course, she doesn’t. The Foo Fighters play as she moves casually past, in sync with all of the words. The one lyric I can’t help hearing is: “There goes my hero, he’s ordinary.”

This is where my heart resides: in the ordinary heroes. The action of getting up everyday and trying to make the world a better place, purposefully. The global citizens who have the empathy to act without pride, greed, and ego-governing. Making small changes and meeting challenges with the faith and belief that you can make a difference; continually fighting, often without acknowledgment or acclaim.

Gina Psyliakou is an everyday heroine. Born in Greece, Gina came to England in October 2000. Studying graphic design, then changing her focus to Humanistic Therapy. Moving back to Greece in 2014, Gina continued to work supporting vulnerable people, and currently works with refugee children. Now she is a “Friendly Space Facilitator” with Praksis in association with Save the Children.

What is it that you do as a Friendly Space Facilitator?

We’ve created a space within the refugee camp where children can play, learn and regain their sense of carelessness. We work with the children of refugees providing them a safe space where they can play, gain a sense of normality, overcome the trauma of war and hardships and build their resilience in order to survive the harsh reality they are living in. Those spaces are important for the camp because they bring a sense of normality and joy within a very dire environment. I am based in Chios Island ... next to Lesvos and [it] has big numbers of refugees arriving.

What originally inspired you to work with disadvantaged young people?

When I was studying in Banbury... there was a lot of talk about young people and their behaviour. The ASBO [court] order had started being served to young people that were antisocial according to the government. It felt like young people were being criminalized for being young and for the failures of their parents, their schools, their governments and society in general.

This made you want to get involved?

I started working as a graphic designer, campaigning to start inspiring young people to believe in themselves to have a dream. I felt that they had lost their way, and had no one to guide them. They were just reacting in a world that we had created that wasn’t okay. The world wasn’t inspiring them to be the best they could be. By the time I finished my degree I realised that I wanted to work more with young people and support them directly.

So after Banbury where did you start with your newfound passion?

I went to Brighton and I found my first volunteering position, which changed my life forever. The Young Peoples Centre is for young people that have been isolated from society, and are unloved and wounded. Here is where they can find a place they can belong and be themselves. Where they are accepted and cared about. It is an inspiring place that has taught me so much.

What would you say was your biggest lesson at the Young Peoples Centre?

[T]o support a young person you have to empower them and teach them how to do things for themselves. Help them believe in and understand themselves enough to be able to tolerate failure and keep going. And never, never give up on them, no matter how many times they fail. We, as professionals, representing sometimes the supportive parents these kids never had, we have to be consistent, honest, fair and forgiving.

Tell me who has inspired you in your work?

The people that inspired me where those who challenged me in my work, by making me reflect on my behaviour and [taking] the time to teach me. I have also learned a great deal from the young people I worked with over the years and especially those who had horrible unloving childhoods, but still had a big capacity for love and forgiveness.

What things in your opinion should we have in mind to live better lives for ourselves and others?

That’s a big discussion, but three things that I believe would make a big difference and bring a domino effect are: living closer to nature, strengthen our sense of community and eliminate competitiveness. I believe there is a big void within us by living away from nature that cannot be contented with anything else. That sense of humility you feel in nature and the connection to everything around you, gives you a sense of peace and balance, something that we’re denying ourselves by putting us above nature.

Secondly, I feel that isolation is one of the big issues in the western world; individualism is overrated. We are social beings; we don’t develop without connecting to others, so we need a feeling of community and solidarity in order to survive.

And lastly,... [I think that] competition should only be acceptable in sports and even there up to a point. We should strive to better ourselves in everything we do and work with each other for the common good, not individual prosperity only.

Gina is an agent of change, fighting for a better world for herself and those around her, where optimism is fast becoming a precious commodity. Reminding us to power forward by walking, sauntering, stumbling or crawling, because it will be worth it in the end.

Aradhana Kothari is a former Youth Worker and Community Development worker (although the role never really escapes you). Living nomadically at present trekking high mountains and diving deep seas Aradhana is enjoying the exploration of new cultures, tastes of new food and constant challenges on her understanding of the world.

Tuesday, 19 April 2016

Women You Should Know - Lisa Leone by Jessie Florence Jones

MJB by Lisa Leone
Women You Should Know:
Lisa Leone 
by Jessie Florence Jones

When it comes to strong women, hip-hop doesn’t often open its doors very widely. Almost everybody has heard of Nicki Minaj, whose hard-hitting, empowered raps broke through an industry perpetually dominated by men. Perhaps even more have sung the praises, or bathed in the light of the artist Mary J Blige. Apart from performers like these, hip-hop can be a minefield for women. A rare exception is Lisa Leone, a photographer who has spent her career documenting the aforementioned Blige, Nas, and Snoop Dogg to name a few. Hailing from the Bronx, Leone started her career by photographing musicians, and eased her way into cinematography, shooting videos for the likes of D’Angelo and TLC. Like Bibi Bourelley (the woman behind a lot of Rihanna’s smash hits), Leone has a long list of accolades that would suggest she belongs deeply nestled into the public’s address book of hip-hop. 
After working on Stanley Kubrick’s Eyes Wide Shut, Kubrick became her mentor, which is visible in her black and white shots. The contrast of grit and delicacy in her monochromatic stills remind me of Kubrick’s Lolita, blending the disturbing with the beautiful. This is something that makes Leone so important in my eyes; not only has she photographed many household names, but she also has a unique ability to take such huge stars and make them appear vulnerable and human. Though often depicting artists performing or in the studio, there is a constant sense of candidness, the photographer’s presence seemingly absent. They don’t appear staged or forced, simply a personal peek into the lives of these artists. Her photographs are an invitation to spend some down time, away from the expected decadence, with these stars, depicting them as intimately and genuinely as possible. 

Nas by Lisa Leone

Leone has expanded her work to film, with a number of titles under her belt as cinematographer, writer, and director. Her debut short Exactly was shown at both the Sundance and Tribeca film festivals. Since then, she has directed, or co-directed, four films. In 2014 she released Here I Ama collection of her photography portraiture. The title reflects the struggle and hard work that involves surviving such a male-dominated arena, to become a name on the tip of everybody’s tongue. As recording artists such as M.I.A and Azealia Banks and others build on the legacy of early women in the art form like Leone, the creation of a distinctly female sphere  of hip-hop becomes a reality.

Jessie Florence Jones 22 year-old student based in Leeds currently doing an Erasmus year abroad in Berlin studying English Literature. Was formerly Fashion Editor at the Gryphon, the university newspaper, and have had my illustration on crownrules website.

Editor's Note: We have so many pieces, we've gone past Women's History Month! You can find additional posts in the Women You Should Know series in the blog archives  from March 2012, 2013, 2014, and 2015.  If you are interested in being a guest blogger on the Zestyverse, let us know!