Guest blogger

The other day I was having a rant on social media about the language used within the disability sector and the assumptions made about us. My friend Ainslee was feeling the same way as me and I suggested that she get it out of her system by writing about it. Ainslee took me up on my suggestion and I have the privilege of sharing it with you all here on my blog. Here is her piece!

For a while I’ve been thinking about the terminology used in regard to people with a disability i.e. people like me. When I first started my Anthropology PhD, examining ambiguous identities in online worlds, it was suggested I not only look at my area of interest (Indigenous Australians) but also at other categories, such as race, sexuality, gender and disability. I’ve scaled it back to the first category again, but I did a lot of reading about disability studies, contacted other people with disabilities and had many conversations about terminology etc. It didn’t take long for me to realise how fraught the language is in this area.

Let’s commence with nomenclature. I am the only person I know so far who says ‘person with a disability’ as opposed to ‘disabled person.’ Why? Because the former suggests that the person cannot function (just like a bomb that has been ‘disabled’).

Then there are patronising and/or unconsidered statements. My friend Tully recently posted something about condescending statements such as ‘helping people with a disability to achieve their goals’. This infuriates me, as it did Tully. And what about this? I was once nominated for a ‘Disability Award’. I sat there and thought, “Hold on, so it’s an award for the person who is most disabled?” When I pointed out that the title was offensive and suggested ’Community Involvement Award’, it was the prize givers who were offended! Seriously?

There are so many times in my life when people have stunned me with their thoughtlessness. A significant other being told that he’s a special person for giving “someone like her” (meaning me) a chance! Having this conveyed to me because they didn’t know how to process it, was like a punch to the stomach because the initiator was someone who I thought would have had more sense. These people use language in our conversations as if with having a conversation with a child, when in actuality, there is only a few years difference. It takes every ounce of energy in my body not to scream at people like this, who likely mean no harm, yet cause it by belittling others and perpetuating ignorance. The perpetrator of this offence still is unaware that I know what was said to my significant other and that every time we meet I feel sick. I would love to find the right time to say something about it. Alas I haven’t yet, and am not sure I will. I do not want to cause offence, even though they have offended me, in many ways, and in ways that I did not think I would still occur in this day and age.

Often it’s the people who mean well who are the absolute worst. I’ve dealt with service providers who talk to me like I have the mental capacity of a 3 year old. I respond without a smile and a matter of fact voice and the look on their face is priceless. “No, you are not talking to a moron, you are talking to an adult, just like yourself.” “Who would have thought!” “Surprising isn’t it?” And when you provide constructive feedback about this so these people can learn from their mistakes? Well for some service providers, this is the worst thing in the world. People with a disability shouldn’t complain, we should just feel lucky that we have these services in the first place. In my imagination I slap my forehead “Oh sorry, I forgot.”

From my own observations, if you don’t have a disability, doing a certificate in disability studies does not make you qualified to know how to deal with people with a disability. Learning FROM people with a disability, THAT’S how you do it. Oh, and don’t tell a person who is in a hospital bed that “You don’t look like you could do [whatever] lying there like that”, or who think when a person tells you they work, it means they’re getting paid to sit on their backside. This only makes you look stupid and is offensive to the person who has had to deal with such nonsense all their life.

And then there are the do-gooders who like to complain FOR you, even when you don’t have a complaint yourself. These are probably the most frustrating people to be around. They don’t ask if you have a problem with something. They assume you must have, hence they speak loudly in response and are offended for you. In these situations, the only offence is their behaviour.

Finally we have those who claim the glory for the work done by a person with a disability, because the former worked with them to achieve something. In such cases – so common in bureaucratic situations – you are a statistic. Neither your work nor your worth matter: it’s what those who ‘gave you the chance’ have achieved. They get the pat on the back for their good work, whilst you’re behind the scenes actually doing it.

Ok, enough ranting. Thanks Tully for asking me to write this piece. I just had to share my thoughts on some of the ridiculous things I have noticed over the years. Since I finished high school in 1995, I had not been involved in any disability related matters until recently. It is only in the last decade that I have come in contact once more with the issues of structural and symbolic violence that permeate and blight the lives of people with a disability. It is something that I wish I could just be oblivious to again, but sadly there are just too many reminders out there.

I would love to hear about your experiences as I am sure I am not the only one who has had stories like these over the years. Please contact me at arhoo@deakin.edu.au.

Bringing in the new year

Earlier this year I took a left hand turn when I had been following the same path for a number of years. I did this because I realised I needed a change in my life. I needed a chance to focus on myself. Deciding to focus on myself meant stepping outside of my comfort zone and tackling something new.

I took on a career path that was completely foreign to me, thinking that I could handle it. In reality, I probably could have taken it on if I had the opportunity to focus on each task individually. However this wasn’t possible and so the multitasking got the better of me. It led to stress, loss of appetite and panic attacks. It also made me realize that following your dreams isn’t always the best option.

This realization led me to making a huge life decision. I had been at my previous organisation for nearly six years – enough time for me to make firm friends with the people I work with, connect with my clients and for the building to feel like a second home.

I had worked out the building to a tee along with the outer surroundings around it.I had found my favourite cafe, my favourite snack place and the waffle shop. I had worked out the perfect place to park my car when I was running on time and when I was running late.

However, leaving that part of my life behind gave me the opportunity to take a little time to think about my next step. It allowed me to think about things outside of work and what I want to do with my future.

By taking that time out, I was able to make some decisions about what I want to do next with my life, one of which was finding a job in the advocacy space in an organisation where the passion is still fresh and the opportunities are immense.

Next year is going to be an exciting one, filled with many more challenges, new hurdles, new friends and hopefully some exciting times.

But for now, it’s time for me to sit down on my couch and take some time out to prepare for the new year.

Finding my own Pace on International Day of People with Disability

It’s December 3, 2015 – International Day of People with Disability. The aim of today is to celebrate the achievements and contributions of people with disability within the community.

It is also a chance for our disability community in Melbourne to honour who we are, what we stand for and to do it with pride. Paralympians will be showing off their skills at the Para World Sailing Championships; artists with intellectual disabilities will have their artwork on display at the Bayside City Council and the Quippings gang will be performing at the Richmond Town Hall. Tomorrow the disability community will be out there, strutting our stuff unashamedly.

Up until recently, I was unable to speak up for the broader community because I never fully accepted my own disability. I was too busy living a life of apology to my friends, family and colleagues for who I was.

I struggled to feel comfortable in my own skin, there was so much turmoil within my body trying keeping up with the world of the able-bodied; especially my peers from school. Completing year twelve, completing university and completing day-to-day tasks took me double the time it took my peers (and it still does today). It never occurred to me that it was okay to do things my own way.

Because of this, I was always saying “sorry” for taking up people’s time and space. People would tell me to stop apologising but I couldn’t stop. My mantra was keep up and apologise.

But this year, I have reached a whole new level. A level where I am ready to take part in International Day of of People with Disability. A level where I stop trying to keep up with everyone and finally be happy with cruising in the slow lane and enjoying the scenery along the way (and smelling the roses on the way).

This is the year that I am ready to go at my own pace.

For me, this is the Year of Nice ‘n’ Slow.

The Power Of The Professional By Claire Salathiel

Claire Salathiel kindly offered to share a recent experience she went through she was worried her funding through her local council was going to be taken away. Claire recruited the support of an advocate as she believed they would be able to provide objectivity to the situation.

Here is Claire’s story in her own words…

I recently endured a review of my HACC services. During this process, I learnt the value of engaging a professional advocate. I had always considered myself more than capable of advocating for myself, however, my case manager had asked that my Dad be there at her next home visit. I figured she was trying to make sure all her “I’s” would be dotted and her “T’s” would be crossed. I asked myself why this would be and came to the conclusion that they wanted to reduce my services or cut them all together. I decided I wasn’t going to go down without a fight. So I brought in a professional advocate. It was the best decision I ever made.

The moment I informed the case manager that I was going to engage the services of an advocate, the dynamic between her and I changed for the better. Suddenly, she realised I wasn’t a pushover. She asked if I wanted her to find the advocate. I chuckled and said that that would be a bit of a conflict of interest. The dead silence on the other end of the phone told me that they now were worried that they weren’t going to be able to get rid of me. Why would they be worried? Because now this was a fair fight.

The advocate instructed me to go get occupational therapy reports. These reports clearly highlighted the extent to which I was underfunded. They expressed grave concerns about what might happen if my funding was cut any further. Apparently, the case manager of my HACC package wasn’t overly concerned, because she informed DHS that they were withdrawing all services. Yet again, the case manager underestimated my ability to advocate for myself. I knew that funding for HACC is given to the council concerned by the federal government. My case manager and her bosses obviously didn’t think I would go to my local federal member. Within hours of contacting this MP, I had assurances from him that the case manager would not withdraw services until DHS had the funds to take over from the HACC package.

The lesson here is that the most effective way to advocate for one’s rights is in a partnership with professional advocates. If I had approached this review of service using solely professional advocacy or solely self-advocacy, I would likely not have achieved such a favourable outcome. The professionals brought objectivity to the problem, something that is almost impossible for a client or family member to bring to the table, because situations like the above are so stressful. There is a saying in legal circles: the client who represents himself has a fool for a lawyer. The advocates objectivity helped me build a case that would be worth taking to my local member or the media. Without their help my approach to my local member may not have been as successful. Likewise, if I had relied on the professional to make the approach, the outcome may not have been as favourable. By writing to my local member myself, I created a personal connection which may have increased the local member’s willingness to help me.

In recent years I have heard advocates push to get people with disabilities to advocate for themselves without the support of professionals. I am of the opinion that this is not in the best interests of the client. The most favourable outcomes are likely to be achieved when clients have professional support to make the best use of their self-advocacy skills.

One hand helps the other

I am a single woman who lives alone in a funky apartment and loves life. I don’t have an Individual Support Package (ISP) – the current state funding system for people with a disability. Nor do I receive any support through my local council. I am fairly independent except for the support I receive from my family and friends.
 
Living on the first floor of an apartment building is great. My apartment is at the front of the building so I get to do a lot of people watching – one of my favorite pastimes. I like to imagine what their lives are like and what their secrets are. I like checking out their outfits and hair styles. I enter their worlds and leave mine for a few minutes.
 
One of the best things about living on the first floor is that I’m not too far from the basement where I park my car. So if there is a fire in the building it’s not too hard for me to climb downstairs.
 
When people meet me they look at my walking frame and jump to the conclusion that I wouldn’t be able to handle stairs. In actual fact I can manage them if there is railing or if people support me by holding my arm. What I can’t manage is lugging Scarlett (my walking frame) up and down the stairs along with me. If I were to do that it would surely end badly!
 
Anyway, recently the lift in our building broke down on at least two occasions. This has been quite distressing for me as I didn’t want to spend all day inside watching daytime television and missing work (I know I’m a sucker for work).
 
I like being as independent as I can be. I don’t really like asking for help and I don’t like the attention that goes with it.
 
However, being on my own and not prepared to stay at home all day, I had no alternative but to reach out to my neighbours. The lovely retired middle-aged couple next to me; the groovy and striking 40-something year-old woman who lives with her foreign boyfriend on the fourth floor and the young couple who live on the third floor. These are just some of the friendly people living in my building.

They have all been amazing. Sending me texts letting me know they are around to help out when I need it. While I climb the stairs, clinging to the railing, they walk slowly behind me carrying Scarlett and watching me at the same time. At the end of my long trip they always let me know that they are available and to just give them a call.
 
While I wait for my ISP to be accepted or for the National Disability Insurance Scheme (NDIS) to finally be rolled out, I need to learn to accept help from my neighbours. And what a great bunch of people they are!

Time for a Change

I’ve been quiet for the last four months. Sure I posted a couple of times but they were mainly referring to other articles or R U Ok? Day.

Why have I been quiet? Well, I decided to tackle a new career path in marketing. I had been in the same role for over five years. While I loved my work I was beginning to feel a little stale and I felt like a change.

I came to a realization that my writing had evolved from just blog writing. I was writing for online publications and my fortnightly column. I was branching out and I thought I would be able to take on marketing.

But marketing is more than writing short pieces and coming up with slogans. It’s about brand awareness and following style guidelines so that every promotional material is correct and looks professional. It’s about promoting services in an engaging way without being too corporate or wishywashy. It’s about ensuring that the organisation is connected and working on the same page.

And a whole lot more.

Don’t get me wrong. I loved it. I loved learning about social media engagement. I loved interviewing customers and staff. I even loved the admin side of it.

However marketing works on a whole other level to social work and the pace is fast.

After three months of trying to keep up I realised that I just couldn’t do it. I realised if I tried to keep up that I would burn out.

Burning out isn’t healthy for anyone, especially for someone with a chronic illness. It can impact my appetite, my sleep and my body – especially my body.

So I made a very brave move – I quit my job. Of course it was scary and of course I was worried about facing the unknown. However, I made the decision and I’m proud of myself.

After five years at the same organisation it is time for me to take on a new challenge. Luckily I am good at networking and good at reaching out. Thanks to these networks, as of tomorrow I will be starting a new adventure.

Wish me luck!!

You’re not alone

I have days where I spend hours on my own. I could be watching the latest season of Veep or Game of Thrones. I could be colouring in pictures – my new hobby. I could be reading a book – anything from a trashy novel to an autobiography. Whatever I could be doing I would be on my own for hours without talking to anyone.  

Usually when I do this I am ok. I might break up the activity by doing the laundry or checking out facebook and  by doing these things I’m usually ok.

The reason why I do it is because I need to rest after a long week at work or after a busy Saturday. I rest so I can recharge my batteries for the next day. However, sometimes when I do this I’m not ok. Spending a lot of time on my own I can end up thinking about dark things – things that I don’t really want to share on here but it can make me sad. 
 My sadness can disappear pretty quickly because I can put on a song and it will make me smile and after singing a long to the music I can move on. Or sometimes I will think about a happy experience or a good friend and I will realise that everything will be ok because I’m not alone.

 I am very lucky that I can get out of these moods. I am lucky that I can distract myself.

However there are some people who reach a point where there’s no way out. They can’t see the light at the end of the tunnel and they think they don’t have anyone to talk to.
I’ve realised over the last few months that there is always someone out there for you. It may be the person sitting next to you at work, or the barista who has served you coffee for the last few years. It could be your neighbour who yells out hello when they see you. It could also be your dentist. Of course they can’t solve all your problems but they can possibly cheer you up and give you that motivation to keep on going and get help.
Talk to someone – let it out because while it’s helping you it may just also help them too. 
Please take care of yourselves and know there’s help out there. 
Today is R U Ok? Day. It’s a day to take the time out to ask your friends, family members, co-workers, or even your neighbour how they are doing. Give it a shot – you never know what kind of a difference you can make.