Who remembers the days of normalisation? That wonderful term of the 70’s that disability workers and activist bandied about. Normalisation was the answer. “What The Hell’s Normal Anyway” screamed the banners. This is at a time where society began to abhor the institutionalisation of people with a disability. The philosophy of normalisation was simple – People with a disability had the right to participate in society in the same way as NORMAL people. They had a right to work, they had a right to be educated, to love, to play and just enjoy life like the rest of us. They had a role to play in society. It was their choice!

The difficulty with the normalisation philosophy was and is that somewhere along the line the idea of choice got lost. Instead of being able to choose if one wanted to work if they had a disability the philosophy became one of YOU SHALL WORK! Instead of being able to choose whether you wanted to live independently or among other people with a disability the philosophy became YOU SHALL LIVE INDEPENDENTLY AND AMONG YOUR ABLE BODIED PEERS! Instead of being able to choose whether you were comfortable as a person with a disability the philosophy demanded that YOU SHALL BE NORMAL. The lack of choice in normalisation meant that the whole philosophy fell in a heap because rather than empower people with a disability being disabled was almost seen as being inferior

It is interesting because rather than promote acceptance of disability, normalisation almost made disability a taboo. Danforth and Rhodes highlight this beautifully in their paper, Deconstructing Disability[1]. They provide a beautiful example of a parent who sent their child to a mainstream pre-school for “severely handicapped” and “non disabled” I have pasted this word for word below:

After my 4-year-old daughter had been attending  the Jowonio school—a preschool program that includes students classified by the State as “severely handicapped” and “nondisabled”—for  more than half a year, she asked me, “what’s handicapped mean?” She had overheard me use the term. . . . She had attended this school for more than six months and not learned the meaning of handicapped. Apparently that was because the school staff studiously avoided using the term. Although the staff struggled for alternatives, sometimes using the not altogether satisfactory terminology of special needs, labelled, or severely involved to describe the children to others, in the classroom, they referred to them by name, not by ability or disability. The school does not organize students into ability groups. The teachers and administrators had judged the idea of “handicap” unhelpful, indeed harmful. (Biklen, 1993, p. 173)

This is what happens when normalisation goes into overdrive. It gets to a point when rather than see disability as normal it becomes completely abnormal. Rather than talk about someone that is deaf, blind, intellectually disabled and the like people begin to try and come up with the terms that are ‘nicer’. They start struggling with the language. Don’t say ‘deaf’ you say hearing challenged. Don’t say impaired, god forbid, cos no one wants to be seen as deficits do they? You don’t call someone intellectually disabled or having cerebral palsy you must use a nicer and alternate term like “special needs”.  All of this well meaning claptrap supposedly serves the purpose of normalising the person with a disability. The use of such ‘alternate realities’ actually only serves the purpose of making disability seem as a bad thing.

Danforth and Rhodes call this the Deconstruction of Disability. My own interpretation of this is where mostly non-disabled professionals break down disability in to a series of ‘nicer’ terms that totally take the focus away from disability. By doing so somehow the person with a disability becomes ‘one of us’ and therefore normal. I believe this attempted normalisation of disability actually does more harm than good.

Normalisation motivates much of Australia’s inclusion policy. For non-disabled professionals inclusion often means that people with a disability are included in the mainstream. They are included in ‘normal’ mainstream classes’ at school. Or they can just rock up at any local sporting or recreation club and they are automatically included and accepted. The actual reality is that inclusion, and indeed mainstreaming, is never that straight forward.

Just last week I had contact from a mother. The mother has a child who has an intellectual disability. The mother explained that her child loves basketball and was involved in her local basketball club. She described how being involved in the club caused her child a great deal of stress. The other kids do not really talk to her child. When her child plays the kids see her child as a burden and rarely pass the ball to her. what is worse is that at the end of the game they all go off and chat and interact and fail to include her child in any of this interaction. On weekends the mother’s child attends a ‘special needs’ basketball group where she is much more comfortable and much more happy. The child talks and interacts with her peers more readily in this group and is accepted as an equal.

Yet our society often decries the existence of the latter groups. They call this the segregation of people with a disability. For many people this segregation of disability is a bad thing. Often they will say that such alternative groups will lead to a ghetto of people with a disability. A ghetto is considered a place where minority groups gather and are often rejected by mainstream society. Of course this is an extreme view. It is almost like our disability inclusion policy is the other extreme of a ghetto. It seems Australia’s idea of inclusion is where people with a disability are included but often never fully accepted and often never really fully participating.

Now I do not advocate a society where people with a disability are totally segregated. Inclusion is a great thing but this inclusion must involve choice. You see inclusion is not just about participating it is also about contributing and interacting. It is often unrealistic to expect the person with a disability to be able to rock-up and automatically to feel a part of the group. As a deaf person I know this very well.

I know very few deaf people who love gatherings of people who are solely hearing. They will talk about those awful family gatherings where they were not part of the conversation. They will tell you how awkward it feels when someone decides to take petty on them and tries to strike up a conversation. This conversation often ends in an uncomfortable silence. They will tell you about the basketball game where they scored a few points and went straight home because socialising with ‘hearing peers’ after the game is just too stressful. Many, many will tell you about how much more comfortable they feel amongst their own, where their communication needs are fully met and they are not constantly struggling to communicate.

The problem with normalisation and mainstreaming is it does not consider how psychologically harmful it can be to be part of a group but actually not part of it. It is not enough for the person with physical limitations to just have the ball thrown at them a couple of times and get a pat on the back. It is not enough just to play. Individuals want to feel they belong and that they can contribute. For many this is by interacting with the people of similar ability and intellect. For many it is about interacting with people they can relate to. For many it is about interacting with people they can communicate with. To interact and socialise with others who have a disability is completely normal but often scorned. 

We need to re-think our policy of inclusion. What our inclusion policy currently lacks is philosophy of CONTRIBUTION. Interestingly if you Google “disability and contribution”  you get sent to links about contributing to disability insurance or how contribute to a charity for the disabled.  Here lies the problem. This is how many in our society thinks. They think that disability is something that needs to be controlled and helped. Our society has not yet fully understood what inclusion really means.

Inclusion is nothing without a proper contribution. Perhaps we need to develop a policy of inclusion that stresses CONTRIBUTION. The Oxford dictionary defines contribution as, “the part played by a person or thing in bringing about a result or helping something to advance.” In other words taking part involves playing a REAL part in the end product. It’s all about being a contributing factor!

Oh BRAVO Graeme Innes. Mr Innes is the Disability Commissioner and he is possibly the most influential disabled person in Australia.  (Person with a disability to be PC) Last week he won $10 000 in court against Rail Corp. Using the much maligned Disability Discrimination Act Mr Innes took  the mighty Rail Corp to court and won. Rail Corp, who run Sydney trains, couldn’t get there collective lot around the need to make audio announcements at stops so that the people that required them knew it was time to get off and did not end up in Timbuktu. This must have given Mr Innes a shot in the arm because what he did next was quite inspiring.

Innes sits on the Accessible Airlines Working Group (AAWG). or at least he did. He stepped down from the group in a blaze of publicity. Said Innes, “The group had failed to achieve any major results such as overturning the policy of some airlines to have a limit of two wheelchair passengers per flight.” Innes continued, “I really don’t think the group has been effective in addressing the access needs of people with a disability.” Innes had been on the group for three years. He hoped that his resignation would influence the Transport Minister, Anthony Albanese, to ensure that group was, “task and goal oriented” , with an aim to, “perhaps put in some goals and timelines to remedy these issues.” [1]

For Mr Innes to take this step took some considerable courage given his position. His resignation letter to AAWG was quite scathing. In the letter he claimed that the group had, “achieved little of significance.” He then went on to list issues that the group had failed to address which included the two wheelchair policy and the, “Chaotic approval process for people wishing to travel on airlines with assistance animals.” As a guide dog user Mr Innes would be very familiar with the latter. Mr Innes went onto express his disappointment with having to resign because, “.. it is my normal approach to work cooperatively with Government, industry and the disability sector to achieve reform.” [2]

In the same letter Mr Innes is critical of the court ruling that upheld the airlines claim for Unjustifiable Hardship under the Disability Discrimination Act (DDA).  He claimed that, “The evidence presented was not a broad assessment of the impact of people travelling in wheelchairs on airlines either in Australia or around the world.” Here I disagree. The reason the courts were able to rule as they did is because the DDA is a fundamentally flawed law. To blame the courts is wrong. Mr Innes may be well served to use his influence to push for reform and strengthening of the outdated DDA.

Avid followers of the disability sector would know that the Human Rights Commission is currently celebrating 20 years of the DDA. In its hey day the DDA was a wonderful reform. It has achieved much particularly in bringing attention to and improving human rights for people with a disability in Australia. It is only right to celebrate some of the achievements that have come about because of the DDA.  Celebrate by all means BUT balance this with an honest analysis of the weakness and reforms needed to strengthen the DDA. The decision of the courts to grant the airlines wish for no more than two wheelchairs per flight is a prime example of the weakness of the DDA. To blame the evidence presented in the courts is to deflect from the real issues.

Mr Innes currently sits on and endorses another working group that is as equally ineffective as AAWG. This group is the Accessible Cinema Advisory Group (ACAG). The Rebuttal has oft been critical of Mr Innes public and glowing endorsement of the Accessible Cinema Roll-Out. A major responsibility of ACAG is to monitor the Accessible Cinema Roll-Out. Mr Innes is often forthright in his endorsement of the cinemas involved in the Accessible Cinema Roll-Out  despite knowing that many, many Deaf and hard of hearing people are immensely dissatisfied with it. In endorsing the Accessible Cinema Roll-Out, to the point that he and representatives of Media Access Australia recommended that the cinemas be nominated for a Human Rights Award, he has angered many in the Deaf and hard of hearing communities who feel he has completely ignored their feedback.

Earlier in the year the Action on Cinema Access Group (AOCA) seriously considered withdrawing from ACAG because they saw the group as not adhering to its terms of reference. AOCA also believed that, like AAWG, the ACAG was totally ineffective. It decided not to withdraw because many of its members urged them to remain. The members felt that it was important to continue to have at least some influence at Government level. As a representative group it listened to and respected the views of its members and decided to remain a part of the ACAG.

But the recent decision of Mr Innes to resign from AAWG has changed the playing field somewhat. Given that Mr Innes has resigned from AAWG because he feels it is ineffective and not achieving its mandate perhaps AOCA now have good reason to withdraw from ACAG. It is true that AOCA does not have the same profile and influence of Mr Innes but the principle is the same. One of the arguments that Mr Innes put forward for resigning from AAWG was that he could no longer justify the resources and time he was devoting to the group when it was so ineffective. AOCA is completely unfunded with less resources available at its disposal than Mr Innes. It would be well within its rights to step down from the totally ineffective ACAG.

But kudos where they are due. By stepping down from AAWG and bringing media attention to the reasons he has resigned Mr Innes has made a clear statement. This statement is simply that he will not accept mediocre outcomes for people with a disability. He should be congratulated for that. BUT having made this stand Mr innes has set a precedent. In stepping down because AAWG is ineffective Mr Innes needs to take a similar stand for other issues. He needs to be forthcoming about the weaknesses and reforms needed for the DDA. Equally he needs to support groups like the Deaf and hard of hearing on working groups like ACAG when outcomes are similarily ineffective. Particularly when these groups make their voice heard.

Well done Mr Innes on flexing your muscles in regard to AAWG. Long may it continue. Hopefully it will inspire other people with a disability and disability groups to make a stand. No longer should any of us accept second best.

Do you know what the Deaf sector is guilty of? The Deaf sector is guilty of accepting mediocrity.  Now it’s not just the Deaf sector, one could argue that it is the whole of society. But if you want to hold up a sector that is benchmarking the acceptance of mediocrity then the deaf sector is it!

 “When small men attempt great enterprises, they always end by reducing them to the level of their mediocrity.” – Napoleon Bonaparte …. Bonaparte may well have been describing many of the leaders that make up our Deaf sector organisations. Whether it is our services organisations, our advocates or even our educators, mediocrity seems to exist in epidemic proportions.

Let’s look at education. I have worked as a social worker for nearly a quarter of a century. It seems that mediocrity is a bastion that defines deaf education. I have lost count of the many times I have heard that little Johnny, “.. is doing ever so well.” Little Johnny would be ten years old and reading at the level of a six year old. The word I hate most is that AWFUL, AWFUL word – coping. Talk to a teacher and oft is the time you will hear, “Oh but Shelley is coping so well.” Coping in this case is usually more than a few wrungs below her peers. But she is coping so that’s alright then isn’t it? Of course it is not. Demand the best, our deaf kids deserve it.

I will never forget working at a High school in Alice Springs. I worked with two deaf Aboriginal girls there who were barely literate. One of them was very capable and I pushed very hard to improve her numeracy skills. This is a near 18 year old that could not understand even basic fractions. But we were winning. No matter that she sometimes chucked tantrums, she was making progress.

You see the school had, until then, when the going got tough just sent her to the back of the classroom to paint pictures. One day while keeping the girl to the task my supervisor walked in. The girl burst into tears. “What’s going on?” asked my supervisor. I explained that I was just pushing the girl hard because she was making great progress. “What for?” said my supervisor, “You are wasting your time. All she will do is stay home, cook and have babies.” For one of the few times in my life I was lost for words!

What of some of our key service providers? We have almost got to a point where human contact with clients is shunned. God forbid that we provide family support in the home where we can achieve real outcomes. Instead we set up websites, print endless booklets, or we make yet another CD or DVD to inspire!

I accept that there is a place for these kinds of resources but we are now swamped with them. Little Carly is struggling at home and at school. “Here go to this website and learn some important strategies.” Or, “Read this pamphlet there are some great tips..” Or, “Ring this 1800 number, there is someone waiting to talk you through it ….” Of course no one is ever there or it is always engaged.

Do you know why we produce endless CDs and DVDs? Do you know why we spend so much time developing websites? Do you know why we set up hotlines? Because it’s cheaper than providing a real person. Sure I get it that money is in short supply but we have reached a point where we have just given up and accept what are, in reality, often mediocre and faceless solutions. We need to fight for real services provided by real people. As one client told me, “I get so many pamphlets, DVDs and booklets I just throw them away, they’re next to useless.”

But what really defines mediocrity is CaptiView., that awful device that the cinemas introduced to provide the deaf with access to the cinemas. What is worse this device was introduced with the full backing of our Deaf sector advocates. No matter that feedback was coming thick and fast that CaptiView is awful and spoils the viewing pleasure. No matter that complaints abounded about headaches and eye strain. No matter that the deaf were screaming out for captions on the screen. Our advocates formally accepted and backed CaptiView as the best technology going.

Did you know that a government representative told a parent who complained about CaptiView that, “ .. she should be grateful for it.”  How many times have you heard our advocates implore us to, “ .. give CaptiView a go” ? Even after people who had used CaptiView multiple times told our Deaf sector representatives that they still hated it. How many times were the deaf sector told to, “.. Accept CaptiView because to not do so would be divisive and we might lose everything we have gained.”? How many times have we heard the old furphy, “ .. At least we have more choice of movies, so be grateful.” Truth be known is that CaptiView is the absolute pits of mediocrity! That we are being urged to accept it is mind boggling.

The website Lift Big Eat Big[1] makes a salient point when it claims that, “We now live in a society where doing the bare minimum required to keep your heart beating is supposed to earn you a pat on the back and a sugar-free cupcake.” This is exactly what is happening in the deafness sector. We are being urged to accept worse than second best and it must stop.

And typically stopping the rot falls with us. We who have no resources and no money have to take up the fight. Let this fight to end the acceptance of mediocrity start this weekend at the Action on Cinema Access campaign. On Saturday 16^th February Action On Cinema Access (Who have no funds whatsoever) have organised a protest. This protest will be held outside Greater Union Cinemas at 131 Russell Street Melbourne. They have done this entirely on the back of volunteers and have official permission from the Council to hold the protest.

Come along and wear yellow on the day. Show your solidarity. The end  of the acceptance of mediocrity starts with YOU!

ACTION ON CINEMA ACCESS

Still Unhappy with captioned cinema Access now?

Government and Deaf/disability peaks not listening to you?

Cinemas still ignoring your RIGHT to enjoy a movie?

COME AND RALLY AND MAKE THEM LISTEN!

GREATER UNION CINEMAS – 131RUSSELL STREET MELBOURNE

Saturday February 16th 2013

11.30am for a 12.00 noon start.

Wear Yellow and/or Black

For more information email: feedback.AOCA@gmail.com or Facebook the Action On Cinema Access Page

I love Bill Gates and Steve Jobs. They are my heroes, and here is why! (With apologies to all Geeks that went before them and after that I also should love equally…)

I moved home this week, 156kms from Ballarat to the Yarra Junction. To save money we chose to do the move without professional help. This was made possible because we had assistance from terrific friends. As one might imagine such a move over a large distance is a logistical nightmare. It was made worse by the fact that at 4pm the day before the move the truck rental company cancelled our booking. I frantically got onto the iPad and started to look for alternatives. Nothing was available online at short notice. My wife got hold of our friends by SMS to reschedule the move. We tried calling other truck rental places through the NRS on the iPad. They were unfortunately all closed. Luckily for us I woke early the next day and rushed to a truck rental place near our home and was able to secure a truck for the move.

Now the reader may be wondering where all this is going. The last thing you want to read about is someone moving house. I mean, how boring is that? But this little episode got me thinking. I asked myself the question – How would I have coped with this sort of drama 15 to 20 years ago? It struck me that I would have been up the proverbial creek without a paddle. And all because I was deaf!

Let’s look at the simple process of renting a truck. Twenty years ago I would not have been able to rent a truck online. There would not have been a web page to go to, enter my details, date of hire and payment details. I would not have even been able to phone the company. I would have either had to go to a truck rental company in person or I would have had to get someone to call them for me. How inconvenient was that?

Twenty years ago the company would have had no way to contact me to inform me the booking had been cancelled. Of course I may have left a phone number of a friend or my parents for them to contact me but this would have been a landline. In the days before SMS even if the company had contacted the friend that I had listed, the said friend would have had no way to contact me. There was no email either. The friend might have visited my home and left me a note but that would have meant I would not have got the note until much later. In all likelihood I would have rocked up at the truck rental place in the morning only to find my booking cancelled. I can imagine I would not have been very pleasant company if that had happened.

The next day friends were coming over to help out. I needed to reschedule urgently. Twenty years ago there was no NRS so I would not have been able to call them. I would have had to pull over to a petrol station or a pub and ask some kind service person to call for me. Or I would have had to detour to my friends place and let them know. If they had not been home all I could have done was to leave them a note under their door. I could not have sent them an SMS because there was no SMS. Email would not have been an option either. I wonder how I lived back then. I must have been such a pain asking everyone to do things for me.

Indeed my poor mother was my ears. I would often ask her to get on the blower to Phil to meet me over the oval to play cricket. She would sometimes call my girlfriends to confirm dates or even cancel them. She took all my calls and made all my enquiries. My god what a burden!

Yet here we are, a little over 20 years later, and I have a myriad of communication options at my finger tips. The company emailed me to say truck cancelled. It is true that this was annoying, but at least they were able to inform me. I didn’t need to wait to get to my desk to read the email either, it came to my iPad. When I got home there was a message on my mobile too. (I had left it with my son for the day lest he needed to contact us.) In no time at all, knowing that I had no truck, I was able to instantly look for alternatives. True none of these alternatives were fruitful but at least I was able. Through SMS I was able to instantly contact my friends to quickly change plans. It is mind boggling really that all these developments have occurred in the last twenty years.

All I would have been able to do 20 years ago is cry HELP!  At worst I would have known nothing, rocked up at the truck rental and had just under an hour to try contact my friends to tell them not to hire a trailer and reschedule everything. Fast forward 20 years and all these nightmarish scenarios are but a thing of the past.

These rapid developments have impacted on every aspect of my life. Twenty years ago at work I was limited to what I could do because I could not talk on the phone. Now I am communicating with people easily and quickly. I email, I text and I use Skype and Instant Messenger. I am able to negotiate, organise, inform and advocate all though a variety of mediums. I can receive and return phone calls through the NRS. I am involved in online discussions through Facebook and Yammer. I even have a Voice Recognition App on my iPad for colleagues that are difficult to lip-read. They give me short messages by speaking into the App. It really is amazing.

What did I do 20 years ago? I cried for help, that’s what I did. I badgered and bothered people to make calls for me. Indeed in my first job I would block book John or Barb to assist me with cold canvassing calls that were essential in obtaining employment for my clients.  Now I do this all myself, how the world has changed.

23 years ago precisely I had a date with a girl for the first time. I caught a bus to her home but hopped on the wrong bus. I was hopelessly lost. It is a first date and you just want to look cool. You don’t want to be late. You want everything perfect. How cool was I rocking up at the petrol station to ask the attendant to call my date to come get me because I was lost? Today I would still be uncool but at least the uncool could be resolved with a simple SMS with no need to involve a third person who happens to be a petrol station attendant. (But thank you Mr Attendant you made the call without a hint of a smirk 😀 )

Yep the world is a better place for me and other deaf people today. It’s still got a long way to go but compared to twenty years ago it’s simply awesome.

And that’s why I love Bill Gates and Steve Jobs and they are my heroes! (With apologies to all Geeks that went before them and after that I also should love equally…)