Category Archives: All about Deafness

All about Deafness

How do you communicate with a deaf person?

How do you communicate with a deaf person_-1

If I tell you I’m deaf, that doesn’t actually tell you anything about me. For instance, it doesn’t tell you how I communicate. Maybe I use Auslan (Australian sign language). Maybe I can’t sign at all. Maybe I lipread well. Maybe lipreading stresses the hell out of me and I’d rather not. Maybe I can talk on the phone and enjoy music. Maybe I can’t or don’t.

So how do you know the best way to communicate with a deaf person?  Follow their cues.

Notice how they communicate with you, and respond in kind. If I speak to you, speak back.
– Face me.
– Open your mouth when you speak, without over-enunciating or going too slowly.
– Don’t shout. If I don’t understand, try rephrasing.
– Add visual clues such as indicating the thing/person you are talking about.
– Watch my facial expression to see if I understand, and if I don’t, find another way to communicate until it works.

If I indicate my deafness by pointing to my ears, and miming that I’d like to write with pen and paper, don’t respond by speaking and expecting me to lipread you. Find a pen and paper and write instead, or use your phone.

While you’re at it, act normal. Don’t tell me about every deaf encounter you’ve ever had, or make me sit through a demonstration of the fingerspelling you learnt at school, or assume that I’m not intelligent. Don’t share your heartbreak that I will never hear the birds twittering nor the patter-patter of rain. And definitely don’t suggest that I undergo surgical intervention.

When referring to someone’s deafness, use the same terms as they use. If they say ‘hard of hearing’, don’t call them ‘deaf’. If you’re not sure, ask. In fact, just about everything can be clarified with a simple question. Before you ask, though, think in terms of basic courtesy that you would extend to anyone. For instance, don’t ask overly probing or personal questions if you are strangers.

If you’d like to do your bit to raise awareness about deafness, feel free to share this post. Thanks!

Just another day battling Deaf discrimination

Hello M,

I was disappointed by your email. Do you know what it’s like for me, as a Deaf person, to repeatedly ask to join courses, retreats, programmes, seminars, conferences, and schools, only to be told, ‘We do not have a programme to suit your particular needs’?

Of course you don’t have a programme to suit my needs! Our society is not encouraged to think about access. Organisations don’t routinely think about how they can ensure their programme will be accessible to everyone. No. It’s up to us to ask. That’s why I emailed you instead of just enrolling and showing up like others have the privilege of doing. Although the law specifies that you are obliged to provide me with access, at your own cost, in reality, that rarely happens. I understand this. So instead of asking you to provide access, I made up some solutions for you.

I suggested that I bring along a friend who would interpret for me (at my own cost, not yours – the only inconvenience to you would be that she’d be standing in the room waving her arms about), and that to ensure the trip was worth her while, I’d miss out on half the sessions being interpreted. For these sessions I asked you for a print-out of the guided meditations. I figured you’d probably already have a script for this so it might not be too hard for you.

Knowing that you have probably never considered how to accomodate a Deaf person before, I made it easy for you. The single thing you needed to do to accomodate me was provide a print-out. Other than that, you would need to tolerate the annoyingness of me and my Deafness.

However, even that was too much for you. You graciously conceded that I might come for ONE NIGHT (you will be kind enough to put up with me for that long), and pay $95 for the privilege of doing so, unlike the rate that my friend Rose pays you when she attends, which she tells me is $35 per night.

I’m glad to hear that you are happy to ‘assist in any way that we can’. How about assisting in the very way that I asked you to? By tolerating the inconvenience of my Deafness (which is somewhat more inconvenient to me than to you, I might point out), and providing a print-out? Oh, and welcoming me for as long as I would like to stay, at the rate others pay?

Yours sincerely,
Asphyxia

(Thank you for your blessings of peace, joy and inspiration. Right now I’m not feeling especially blessed, peaceful, joyful nor inspired, as I write yet another email to yet another person who has routinely excluded me because I am Deaf.)

Should you really be giving me that little extra, just because I’m Deaf?

should-you-really-be-giving-me-that-bit-extra-1

When I was travelling in France, my friend Jenine and I went into a bakery. When Jenine ordered, the guy serving us threw in a couple of extra pastries for free. Jenine blinked in astonishment. ‘It must be because you’re with me. I NEVER get freebies.’

I think she was right. Y’see, I get freebies all the time. Let me tell you about this lovely lady who works at my favourite op shop. The first time I visited, she took a shine to me. Even though she doesn’t normally work the checkout, once I’d selected my purchases, she rang them up for me specially. I almost died when I saw the total price. It was something like a quarter of what I expected to pay. ‘You ask for me, next time you come in,’ she told me. I do, and every single time I walk outta there loaded up with goodies that I’ve barely paid a cent for.

While this is a somewhat extreme example, I’m prone to getting special trestment everwhere I go. Airports, I am led straight through – I don’t wait in many queues. Discounts are mine for the smile. If I want to use a toilet in a shop and it’s against their policy, they’ll let me use theirs anyway.  Some of my friends know how to work the system. When it’s time to pay, they sends me up the front.

Why do I collect these privileges, when people like Jenine, who is so much kinder, more generous, thoughtful and deserving than I, never get them?

I can only assume it’s because I’m Deaf. People see me signing and feel compelled to go that extra mile for me. A sweet smile just seals the deal. A friend of mine with a Deaf daughter mentioned that her daughter gets free stuff all the time too. So do my other Deaf friends.

My attitude is this: scoop it up. Afterall, I have to put up with the suckier parts of being Deaf. Why not enjoy some benefits too?

But there’s something uneasy for me about all this. Deep down, I suspect that if the people dishing up the freebies to me really knew me, they wouldn’t give me a thing. I’m not as sweet and innocent as I look. I live in fear that they might discover the real me.

I’m also suspicious of what motivates all this giving. The only thing I can really come up with is that they feel sorry for me and want to give something to someone worse off than they are. It’s a laudable idea. We should all do it. But am I really worse off? I mean, there are some serious downsides to being Deaf, but there are some pretty good perks. The ones I’ve mentioned here are just the tip of the iceberg. If I could choose, I’d still choose to be Deaf. Really. I don’t know much about my Op Shop Lady, but I’m willing to guess I have (had! until fairly recently) a nicer life than she does. I mean, her life might be great, but she often looks kind of tired and worn down, whereas I normally felt inspired and was lucky enough to have a career that I couldn’t wait to get out of bed in the morning for.

It leads me to think it must be connected to the attitude our society has in general towards Deafness, that it’s a tragedy that must be fixed and helped at all cost. That Deaf people lead impoverished lives and are to be pitied and helped. And you know, this belief system just doesn’t resonate with me. Yes, I want society to change to be more Deaf-accessible, but I dont want people to think my life is awful just because I’m Deaf. Because it’s not.

For much of my life, things have been awesome – I’ve had great jobs, enough money and physical ability to afford to wait in queues and pay a fair price for my shopping and walk a bit further to go to the toilet. It was me who should have been doing the giving.

If you’d like to do your bit to raise awareness about deafness, feel free to share this post. Thanks!

Life and more…

theres-no-map-for-where-im-going-1

I haven’t posted much lately. That’s because life has been pretty intense and chaotic, and I am still struggling with ill health due to arsenic and lead poisoning. The good bit is that I am slowly detoxing and getting better, but it’s clearly a long term journey to become well so I am learning the art of patience! The bad bit is that Paula and I could not reconcile this, and we’ve split up, after 18.5 years together. Unfortunately things are complicated between us as we try to disentangle so many years of shared life and business, and going through a difficult divorce while extremely ill is no picnic, I tell you.

I hope Paula and I will be able to resolve/finalise things through mediation, but I have been advised that if things end up in court, then any posts I’ve made on social media could be used against me. As a result, I need to take my life out of the public eye. I’ve actually been missing you all – I enjoy sharing my journal posts and what’s going on for me creatively/personally, and connecting with you all on that level. For now, though, I can’t do this.

In the meantime, I’m going to repost some of my older stuff, especially about Deafness and journaling and so on. And since my Auslan course has now finished, (it’s been running for 1.5 years!) I reckon I’ll go back to the start so those of you who didn’t keep up the first time can jump on the Auslan bandwagon, and those who did have some handy revision.

Also, I’ve decided to share my studio, as I’m only in there a few times a week and money is kind of tight these days. If you’d like to rent a space at the Abbotsford Convent for four days a week and more if you are an afternoon/evening person, see my ad over on Creative Spaces.

It is not my goal to be normal

it-is-not-my-goal-to-be-normal

When I was a child, my parenwatch them patroniseme, talking over-loudly with ts noticed that if they told people I was deaf, they’d have to deal with their heartbreak and sorrow on my behalf. They’d watch them patroniseme, talking over-loudly with simplistic language appropriate for a much younger child.

Eventually they figured out it was better to zip their mouths about my deafness, and let them see, through interacting with me, that I was just like any other child – racing around the house with my siblings, spilling apple juice and playing hospital games with toilet paper for bandages. Later, they’d say, quietly like it was no big deal, “Oh, by the way, she’s a little bit deaf.”

They chose not to use sign language with me, figuring that the more ‘normal’ I seemed, the better I’d fit into the world and the more appropriately people would treat me.

I get why my parents made these choices for me. They did the best they could.

But there’s a flip side. I grew up thinking I was only a ‘little bit deaf’ and that it was my own fault that I didn’t concentrate hard enough to understand people. The entire burden of communication rested on my shoulders, as I struggled to make sense of the world through lipreading, with no accommodation by others. There was a subtle but definite pressure to be as ’normal’ as possible, and not to make waves or ask for help because of my deafness.

As an adult, I’ve discovered that by letting the world see I’m deaf, I can share the burden of communication with others, and I can relax more, instead of always being alert to the possibility of people speaking to me. Using sign language, I can chat in a group and it’s enjoyable and relaxing, unlike trying to lipread, which is basically impossible in a group setting.

Instead of straining to be something I’m not, by ‘passing’ as hearing, I choose to be me as I am – Deaf – and to set up my life to be as Deaf-friendly as possible. That makes my world smaller, more limited, but it also makes it more relaxing and enjoyable, and on the balance, that’s what I prefer and choose.

Feel free to share this post or hang a print of this artwork on your wall to raise awareness about this tricky issue. I’ve just listed giclee prints in my shop.

It is not my goal to be normal – Giclee print on reclaimed wood

Do you have the privilege of being unaware of your Hearing Privilege?

Hearing Privilege

Do you have the privilege of being unaware of your Hearing Privilege?

My friend, Danielle Ferndale, has been doing her PhD about hearing privilege in the health care sector. I found her paper absolutely fascinating to read, and afterwards, I found that many of her words stayed with me. She put into words some concepts and ideas that I had sensed but hadn’t been able to articulate. I asked Danielle if she would be interested in writing a blog post for my readers, about her research, which explains what she found in everyday language. She very kindly obliged, and it’s gone live on my blog today. Read on if you would like to know more about hearing privilege.

Enter Danielle:

Hearingness as Privileged

My Background

In June 2016 I was awarded my PhD. My PhD research focused on how deafness is talked about and understood in society. I am a young hearing woman and I was introduced to the world of deafness in 2008 when I became friends a colleague who was Deaf, and started to learn Auslan in 2011.

My PhD Research

Through learning Auslan and doing my PhD, I began to understand the disadvantages that people who are deaf experience when accessing health services and information in Australia. When I started my PhD, I wanted to know why these barriers exist, even for people who used hearing technology. To answer this question I completed two studies. First, I created an online forum for people with deafness to discuss their experiences. Second, I interviewed health professionals. The experiences that people described on the forum and discussed in the interviews, were examples of how d/Deaf people are disadvantaged in society, and how people who are hearing are advantaged. You might know the term audism (Humprhies, 1975). Audism is when a hearing person believes they are superior to people who are d/Deaf. This includes believing that being able to hear means that a person is more intelligent, successful and happy. The opposite of audism is being privileged because of the ability to hear. I decided to call this ‘hearingness as privileged’.

Hearingness is a word I use to describe the opposite of deafness. I like to use the word hearingness to try and normalise the experience of living with a hearing loss or deafness, as people are living with hearingness.

‘Privilege’ is the opposite of ‘oppression’. There are other examples of privilege and oppression. Privileged categories include white, male, straight and able-bodied. Oppressed categories include indigenous, female, same-sex-attracted and disabled.  In this post I explain the concepts of oppression and privilege and offer strategies for how you can challenge systems of privilege and oppression in your everyday life.

Privilege and Oppression

Every day we are exposed to stories and images of people being discriminated against, bullied and oppressed because of the social category they belong to – their race, gender, sexual orientation, religion or physical appearance and ability. Privilege and oppression is complicated because people belong to multiple categories. A person can belong to privileged categories and oppressed categories at the same time, for example an able-bodied, white, same-sex attracted woman. People who belong to oppressed categories can also oppress other categories, for example white same-sex attracted people can oppress indigenous same-sex attracted people.

When we talk about how to help people who are oppressed, we talk about what they should be doing to help themselves. People who belong to an oppressed social category need to change what they are doing and saying. It is the person’s responsibility to change their own situation. Stella Young talked about “inspiration porn”. This is when people are put up as role models (“if she can do it, so can you”), and when a person is congratulated for their efforts to overcome their disadvantage or barriers. This is most often people living a with disability. One of the purposes of inspiration porn is to inspire people who experience similar disadvantages or barriers to overcome their own situation. An implication of inspiration porn is that people living with a disability have impoverished, miserable lives and are less intelligent or capable than non-disabled people.

image

(image of a man with an amputee leg swimming with the quote “the only disability in life is a bad attitude”.) reference http://www.dailymail.co.uk/news/article-2690473/Australian-woman-says-disabled-people-shouldnt-inspiring.html

People who are privileged can also use inspiration porn to maintain a belief that they do not contribute to the oppression people experience. People who are privileged do not have to examine the advantages they experience that are denied to people who are oppressed. They can continue to believe that people experience oppression because they haven’t been given the right inspiration to change their own situation.

When I was reading and researching about privilege and oppression, I found that most of the research focuses on people who experience oppression. There is very little research or discussion of privilege, and the role that privilege has in the problem of oppression.

To experience privilege means that things such as respect, membership, access or pay is systematically allowed for some people (privilege) and denied to others (oppression) because of the social categories they identify with. In Western society, people who identify with privileged social categories have the cultural authority to define what is considered normal and make judgements about others with minimal consequences.

Hearingness as Privileged

I was able to identify hearingness as privileged when I was analysing the interviews I conducted with health professionals. Many of the health professionals talked about the disadvantages of living with deafness. They described about how people who are d/Deaf are disadvantaged because of the way our society operates. I then realised that people who have hearingness are advantaged. Through no effort at all and simply because of my hearingness, I have access to information and services and no one questions my abilities or my intelligence because of my hearingness. These are advantages that I have not earnt. This started me on the track of reading about privilege. I found a book, ‘Privilege, Power and Difference’ by Alan Johnson. This book was very helpful, explaining how privilege is maintained in society, and the strategies for minimising privilege.

There are a few things I need clarify about privilege.

  1. There is a difference between privilege and earned advantage, oppression and disadvantage. Alison Bailey, the author of ‘Privilege: expanding on Marilyn Frye’s “oppression”, describes how privilege means a person is in a better position to earn more advantages. Advantages include quality education, well-paying job, political power, safety, career promotions. For example, a white, heterosexual, non-disabled male is able to believe he worked hard to earn his promotion. He may well have, but he is unable to see how his quality education, employability and ability to meet job selection criteria, ability to afford professional clothes was made easier because he belongs to privileged social categories. Where the same things would not come as easily to an indigenous, same-sex attracted, disabled woman.
  2. This is when a person is able to look or behave as though they belong to a privileged category. For example, acting heterosexual. People who are able to pass may benefit from the privilege that category experiences.
  3. It is important recognise that being in a privileged category (male, hearing, heterosexual) and behaving in an oppressive way are different. Being in a category is not the same as being an oppressive person who intentionally behaves in oppressive ways towards other people. However, continuing to participate in a system without questioning how they contribute to the oppression of particular groups could be described as behaving in an oppressive way.

Systems of Privilege

When I talk about systems, I am using Johnson’s definition, ‘something larger than ourselves that we participate in’. Systems can be individual workplaces, organisations, industries, families, schools, religious organisations or road rules. Very few people have explored how systems in our society contribute to experiences of oppression. For example, few hearing people have considered how hearing people (as a group), and systems in society, contribute to the oppression and disadvantage that d/Deaf people experience.

So how do systems in our society support privilege? You might think that minority groups, being smaller, are disadvantaged because they have to do what’s best for the larger number of people. But privilege is not related to the size of the group. Privilege occurs through our laws, public policy, informal expressions of speech, stereotypes, and the images and ideas presented our media. This makes it feel normal to behave in oppressive ways. Many of us are unaware that we are even doing so. This is called ‘civilised oppression’. Because it is so normal to behave in oppressive ways, we cannot see how we are privileged. This is called ‘the luxury of obliviousness’.

Privilege is able to continue because we do not challenge it. When we continue to participate in systems that privilege some categories over others, we are choosing to take a ‘path of least resistance’. Let’s take an everyday example: someone telling a joke at the expense of women. In this instances there are infinite paths we could take:

  1. laugh at the joke
  2. not laugh
  3. explain how that joke is hurtful
  4. physically harm the person telling the joke
  5. publically humiliate the person telling the joke
  6. encourage your peers not to laugh

Laughing at the joke is an example of taking the path of least resistance. If you laugh and go along with the joke, you are probably not going to experience any negative consequences. Choosing to not laugh at the joke is an example of taking a path of greater resistance. Choosing the path of greater resistance means that we might experience negative consequences. But we also contribute to revealing that joke as contributing to systems of privilege and oppression. The negative consequences a person can experience range from looks of disapproval, being laughed at ourselves, name called, to more serious consequences such as physical harm or being fired. An example of taking the path of greater resistance is the Freedom Riders who challenged laws and customs that enforced segregation in the United States.

When I was interviewing health professionals as part of my PhD research, I found that health professionals were operating in systems (workplaces, health system, education systems) that privileged hearingness. The professionals described how the health services in Australia are not good enough or accessible to people who are d/Deaf. They also talked about the different ways they are trying to do the best for their d/Deaf clients. They identified the barriers they experience in their workplace trying to improve their own skills and the accessibility of their service. However, many of the health professionals didn’t believe the problems their d/Deaf clients experience require large scale changes such as the introduction of mandatory d/Deaf awareness training in university and workplaces. This type of response to change is a typical response of people who identify with the privileged category. Changes to the system would highlight how one category is privileged over another.

The Australian Health System

The health systems in Australia privilege hearingness. Rather than blame health professionals as individuals for the oppression that d/Deaf people experience, we need to look at the systems they operate in. Health professionals are people balancing their own needs as people (with children, mortgages, bills) and as health professionals (meeting industry requirements, ethics) operating in a workplace (policies and procedures, funding). Although health professionals contribute to the oppression of people who are d/Deaf, changing the systems within which they operate will facilitate change at a system level.

Achieving Change

People who are d/Deaf and who experience oppression are probably already engaged in efforts to challenge the oppression they experience. We need people who are privileged because of their hearingness to recognise how their privilege and participation in systems is half of the problem. Every person has a responsibility to make society an accessible and safe place. Here are some examples of how hearing people can work to change systems (in consultation and collaboration with d/Deaf community).

Education

People in positions of authority at tertiary education institutions should

  1. Mandate the incorporation of course content that recognises d/Deaf people as part of our community (Bachelor degrees of education, psychology, architecture etc.).
  2. Identify and implement strategies for making classrooms and content more accessible for people with diverse learning needs (interpreters, captions).
  3. Entice d/Deaf students into various industries that are otherwise perceived as, or are, inaccessible through scholarship programs

Workplace

In the workplace, people in positions of power or authority need to

  1. Identify and implement ways of making their workplace more accessible to staff and consumers who are d/Deaf (e.g., captions, interpreting, skype facilitates, visual and tactile alarm systems).
  2. Consult and collaborate with people are d/Deaf with the view to revise workplace policies and procedures so that they incorporate the access and communication needs of people who are d/Deaf.
  3. Actively develop a workplace culture that recognises the value of deafness and what d/Deaf people can bring to the profession or workplace (beyond their deafness).

Hearing people in less empowered positions also have an important role. Identifying and suggesting to authoritative people where and how change is needed. Requesting ‘accommodations’ in the learning and workplace environment, enforcing your rights and the rights of others. Making official complaints about their own or other people’s experiences where they have been disadvantaged because of the social category they belong to. Equally important, is complimenting people and services where needs have been met or change has been effective.

Small actions such as not laughing at jokes told at the expensive of oppressed groups, educating people about privilege and oppression, not giving your business to businesses that do not meet the needs of oppressed groups, highlighting the ways in which projects, ideas and workplaces don’t meet the needs of people who are d/Deaf will contribute to achieving system level changes. We, as hearing people, need to be willing to risk the negative consequences associated with taking paths of greater resistance.

In order to address the problem of audism, we need to recognise and change how systems privilege hearingness.

 

More detailed information about my PhD research can be found in the following papers. If you would like a copy please contact me:

Ferndale, D., Watson, B., Munro, L. (in press). An exploration of how health care professionals understand experiences of deafness. Critical Public Health. Doi: 10.1080/09581596.2016.1258454.

http://dx.doi.org/10.1080/09581596.2016.1258454

Ferndale, D., Munro, L., & Watson, B. (2016). A discourse of ‘abnormality’: Exploring discussions of people living in Australia with a deafness or hearing loss, American Annals of the Deaf, 160 (5), 483-495.

https://muse.jhu.edu/article/608794/summary

Ferndale, D., Watson, B., & Munro, L. (2015).Creating deaf-Friendly Spaces for Research: Innovating Online Qualitative Enquiries, Qualitative Research in Psychology, 12 (3).

http://www.tandfonline.com/doi/abs/10.1080/14780887.2015.1008902

Ferndale, D., Watson, B., & Munro, L. (2014). Hearing loss as a public health matter  – Why doesn’t everyone want their deafness or hearing loss cured?, Australian and New Zealand Journal of Public Health, 37 (6), 594-595.

http://onlinelibrary.wiley.com/doi/10.1111/1753-6405.12133/abstract

 

@deafresearchau

https://independent.academia.edu/DanielleFerndale

Deaf is the new black

Deaf is the new black

Even though it’s really hard being Deaf at times, if I could choose to be hearing, I wouldn’t.  Let me tell you what I love about being Deaf.

  • I can claim sign language – the most beautiful and expressive language ever – as my own, and use it whenever I want. I can sign songs, and that is visual poetry, I tell you.
  • I can sleep through anything.
  • Snoring doesn’t bother me.
  • When I work with power tools, I don’t need to wear earmuffs.
  • I can go shopping in complete silence if I take off my hearing aids. No couples bickering, children’s tantrums, blaring announcements or background music.
  • In noisy environments, I am serene.
  • I have a fantastic visual memory and am very observant.
  • I’m granted an automatic passport to the Deaf community.
  • People give me free things, discounts and little extras all the time.
  • I read peoples’ faces and body language better than most.
  • I communicate well with people who don’t speak English, as I know how to get messages through visually.
  • Everyone remembers me.
  • When I meet others who are ‘different’ in some way, we share an instant kinship and openness with one another.
  • I can get away with almost anything by smiling sweetly.
  • I can ignore you when you speak and you’ll never suspect I heard.

Share this post to spread around some Deaf pride!

By the way, the painting is part of my exhibition, Looking Out, Looking In, at Cam’s Cafe Gallery at the Abbotsford Convent in Melbourne until 28th Sept, and it’s available here:
http://asphyxia.myshopify.com/products/deaf-is-the-new-black-linoprint-ink-on-heavy-paper-framed