Limited access is 21st Century discrimination. Let’s get access then we can talk about the fun stuff…..

Another day dawns and another days news. I have noticed a repetitive thread within local and national reports – if the subject includes key words such as disability, spinal cord injury (SCI) or wheelchairs – the common issue highlighted is lack of access. As many media reports focus on this aspect of life regarding disability, the general public might think that this is all people with disabilities have to say and that saddens me as there is so much good stuff!

It is a Catch 22 situation as the topic of access can’t be dropped, there is a constant need to raise awareness, pressure and influence decision makers. If disability advocates don’t keep rattling the cage then this topic quickly drops off the agenda and is de-priortized. I accept that the media, public awareness and advocacy are all intertwined, it’s a complex relationship that can be pivotal in effecting change.

I have written many letters to advocate for change in my own community, I see it as part of my role as a carer. I have written to improve sidewalks, curb cuts and parking signage, features that benefit Emily but also aid the wider population.

Access to the environment is key to a more inclusive society, individuals can move freely and unhindered and not just people with disabilities, but also parents with prams, the elderly, and people with temporary disabilities.

Access is so simple; a wider door, a ramp, lower counter tops, adapted toilet facilities and enough space between aisles to get through a shop safely. Access to the physical environment enables everyone in the community greater independence, participation and social inclusion to pursue an active, social and economic life.

Access negates any discrimination, in the physical environment, of the differently abled. I hope in the future I read less articles about lack of access and more about the success and achievement of individuals whether able-bodied or people with disabilities.

Emily – getting on with the fun stuff!

#The Theory of Everything – highlights issues but it’s entertainment.

I read a review in The Telegraph which piqued my interest and now I have to see The Theory of Everything for myself.

The film is introduced: “In the 1960s, Cambridge University student and future physicist Stephen Hawking (Eddie Redmayne) falls in love with fellow collegian Jane Wilde (Felicity Jones). At 21, Hawking learns that he has motor neuron disease. He and Jane defy terrible odds and break new ground in the fields of medicine and science, achieving more than either could hope to imagine.”

Rob Crossan reviewed the movie in The Telegraph. Rob presents the BBC disability talk show ‘Ouch’, he wrote: “Critics have gushed over Redmayne’s “genuinely visceral performance”. The Telegraph observed that Redmayne is so credible, so convincing, that “you temporarily forget he is acting”.

As a disabled person I have some concerns. The performance is the latest in a long line of what detractors call “cripping up”: able-bodied actors taking on disabled roles, which some critics find as deplorable as the thankfully outdated practise of white actors pretending to be black.

You might draw two conclusions. One: there cannot be any disabled actor in the whole world who could possibly take on these roles. And two: cripping up and critical acclaim go hand in hand. As Frances Ryan pointed out in the Guardian recently, ‘While “blacking up” is rightly now greeted with outrage, “cripping up” is still greeted with awards’.

Even if an actor with a genuine disability were to play the role of Hawking in The Theory of Everything they would still have to deal with the quite horrifyingly sentimental script. To me it goes down as one of the most cack-handed, condescending movie denouements of all time. What we’re expected to believe here is that, for all the quite devastatingly advanced discoveries made by Hawking about the universe, and our role in it, we are supposed to believe that the best thing that could possibly ever happen to him is not to make another scientific breakthrough about black holes, but to simply stand up and have a stroll around the room.

What the film seems to be saying is that “disability is bad and anyone who has anything physically different about them would be better off if they were able bodied”. Which is a quite staggering step backwards into the dark ages.

For portrayals of disability don’t just improve by employing actually disabled actors. The films need to be scripted, directed and produced by people with disabilities too. Because one thing’s for certain, if people who had even the slightest first-hand experience of disability were making films like The Theory of Everything, it’s pretty unlikely we’d see Stephen Hawking picking up a biro as a valid, meaningful or even respectful conclusion.”

I wholeheartedly agree with Rob’s sentiment that differently abled people should be included in all aspects of society including Hollywood’s film industry. The lack of actors with disabilities exists because the appeal of cinematography as an art medium is in bringing a visually impactual story to the big screen, it isn’t required to be scientifically, medically or politically correct.  The pivotal point we have to remember is that films are about entertaining the general public for profit. If a film expands awareness of any subject alongside it’s sales then the studios will take the credit – literally.

Romantically I would like to think the screenwriter thought he’d enlighten the audience with an insight into Stephen Hawkins and his ability to address motor neurone disease.  But this is a film about a youthful romance, the leading man has a strong story with a tangent public profile, commercially the amalgamation makes it a good movie choice.  Sadly for disability advocates Hollywood’s decision-making moguls aren’t driven to produce anything other than entertainment.

 

The blackboard notice in my local cafe told me to – never give up! Why do I need that message over my morning coffee?

I was up at dawn and cycling energetically with my chum; up hills, down slopes and around bends. My Strava (iphone app that plots course and speed) was on and we were loving the fresh bright morning. We arrived, puce and sweaty,  at our local cafe for our regular coffee fix where we were greeted by a blackboard notice telling us “Never give up!”

I like this thought for the day but ponder what we all did prior to these upbeat messages being scribed around our neighbourhood cafes? Did we give up, roll over and expire?

This thought for the day made me muse.What is at stake? What is in danger of being given up on? I would not give up on many things, particularly the support of carers, access for people with disabilities, medical research into spinal cord injury treatment.  I feel passionate about the rights of people with disabilities and I campaign for non discrimination. I advocate for a better disability parking scheme as the current one is abused, I would initiate wheelchair only parking bays that allow wider access.

I write to enlighten anyone who reads my prose about carers and disability issues so that insight disseminates through to friends, family, the community and ultimately multidisciplinary decision makers in society. So I ask myself, without the blackboard thought for the day, would I give up ? The answer is obviously “No” because these issues matter, they matter to me and they matter to a wider population.

The issues that I am addressing are pivotal in society and it’s treatment of people with disabilities. I am urged on by inaccessibility that is modern-day discrimination. I am urged on because living with disability could be minimized with simple interventions; ramps, lifts, automatic doors, adjustments in schools, hospitals, in the workplace and recreational facilities. People with disabilities have the right to equal opportunities and that drives me to advocate for improvements in attitude, I encourage compassion and enlightenment towards the needs of the disabled. Many issues can be overcome simply with education.

I am still pondering whether I would give up on my ideals, whether I would sit cross-legged, filing my nails and sucking my teeth as I despair of any real change. The answer is still “No” because I have ideals, heartfelt passion and a clear vision of progress towards a better society, an inclusive society with options for everyone.

I think the blackboard notice is aimed at the other part of me that despairs of the ironing, the endless laundry, the rogue odd sock and the constant lack of milk in our fridge. Suddenly I need that thought for the day as I must never give up on that lost sports sock, never give up on the ho-hum daily grind because clearly we all would. It is not the ideals we hold with a passion that would be discarded, it is the washing up in the sink. For the daily tedious chores and garden weeds we all have a tendency towards procrastination, but my passionate causes I’ll never give up on because they are too important.

Educate the young about disability to reduce stigma, prejudice and discrimination.

In my everyday caring role I investigate the world-wide-web for information and news relating to anything that empowers, enlightens and educates Emily or myself. Today I read that the National Spinal Cord Injury Association, will gather in Washington, D.C. for Roll on Capitol Hill to shape policies that impact the health, independence and quality of life of people living with spinal cord injuries and disorders. My interest was piqued and I wanted to read their agenda. Listed below are the issues to be discussed:

• Ensuring increased medical access
• Expanding home and community-based services and supports
• Improving access for housing modifications
• Providing accessible transportation for all
• Increasing employment opportunities for people with disabilities
• Ensuring civil rights protections

I applaud all the points above and support discussion on all levels so that legislation, guidelines and policies are developed that service the disabled in society, ensuring their empowerment and inclusion. But I have an idea; if children are educated about disability in school maybe they would grow up to be more considerate, maybe they would grow up to naturally incorporate the needs of people with disabilities into their businesses, incorporate the needs of the disabled and carers into workforce guidelines and training, maybe foster respect for the disabled and their carers within society?

The younger that children are exposed to disability the more normal it appears to them. A lovely example of this was when Emily was in Royal North Shore Hospital (RNSH) a girlfriend visited with a little boy she was looking after for the day. This mini man was wary of Emily and shied away until he had completely reassured himself that Emily’s wheelchair wasn’t scary. When it was time to leave he sat on Emily’s lap for a cuddle which brought an emotional tear as a meaningful moment for all present.  Our friend returned with her charge some days later, he played happily with his dinosaur on the grass quadrangle outside RNSH, bathed in warm sunshine. After a lengthy natter, it was decided we would move indoors for a cup of thirst quenching tea. This small lad jumped up excitedly at the prospect of a treat and ran ahead calling out “Come on Emily, come on Emily!” as she was slower pushing her chair than his little running legs! Exposure to wheelchair users is the simplest way of educating communities and society, exposure reveals people with disabilities are real people living real lives, able and confident, funny and curious, interesting, studious, frivolous, musical.  Disabled people are beautiful and strong, brave and intelligent; just like the rest of the population. It isn’t difficult to see this but you have to be looking and some people need to be shown.

Schools need to promote disability awareness and ability within disability. Education would help eliminate prejudice and discrimination as future generations become more informed and inclusive, aiding change; change in children’s developing values.  Helping to reduce the stigma of wheelchairs and the disabled, instilling a positive attitude to this minority group.

June 10th  – The students from Harrison’s S.J. Preston Elementary School recently participated in the first Disability Awareness Day. All of Preston’s students had the opportunity to experience visual, fine-motor, and physical impairments through numerous activities. See here 

The Guardian, April 13th – Nothing is more important than teaching compassion. Teaching schoolchildren happiness, empathy, altruism and compassion has proven beneficial results for classroom learning as a whole. See here

The stigma of wheelchair use decreases with awareness and education. The wheelchair user’s opportunities are increasing when prejudice and discrimination are reduced by enlightenment.

It’s going to take the global community to address the disabled.

It may take a village to raise a child but it is going to take the global village, our worldwide community to ensure people with disabilities are cared for and their needs addressed so that they can thrive integrated into society.

The meaning of the proverb ‘it takes a village to raise a child’ is simply that it takes more than one person to teach a child the lessons of life. The benefits of many varied carers for a person with a disability is the same as the benefit of the village to a growing child, bringing a wealth and variety of learning.

A wealth and variety of services have to be accessible for the integration of people with disabilities into society. The infrastructure of society; public transport, airports, schools and hospitals, shops and recreational facilities have to be accessible.  Service provision has to be addressed by individuals, local council, state, federal and the greater global community.

My husband and I recently had lunch in town, at a popular Italian. The queue starts half an hour before the restaurant doors open,  imagine our hunger as the waitress sat us down and took our anticipated order. It is in this environment that a wheelchair user would be sidelined as only half the restaurant is accessible, the other half is up a steep flight of steps. There are probably only one or two tables that are appropriate as the traffic of diners and waiters have to pass behind the wheelchair, so what is the etiquette here? Can a wheelchair user book a table? Does a wheelchair user just have to wait for the two appropriate tables? Is it an open and shut case of move on to the next restaurant or come back tomorrow an hour before opening time? It takes the community to decide the etiquette as I would allow wheelchair users to book but that could be argued as discrimination against non wheelchair users that are asked to queue. Society as a whole has to understand the issues for people with disabilities so they can make informed choices as town planners, road, pavement and ramp designers, also those in the construction and building industry. Recreational providers need to address fixed poolside hoists as standard equipment. Theaters and sports facilities need to address access and designated parking nearby. Restaurant owners need to address their in-house policy towards wheelchair accessible tables and allow booking. My list is too long to share in a blog but you get the gist. It takes parents, teachers, restaurant managers, councils, politicians along with corporations, industries and organizations to assist disabled individuals ability to thrive in a considerate community, thrive in a society in which they can access and fully interact.

The world is changing, evolving, so let’s make sure that society and our global leaders make the right choices; legislate for access, make transit choices, make funding choices that facilitate the inclusion of people with disabilities. When life is accessible, the disabled and their carers can work, play sport, travel, book a table for dinner with greater ease  – that has to be embraced globally.

Is The Grass Greener Somewhere Else?

I think on occasions it is human nature to think the grass maybe greener somewhere else. The truth is that life is as good as you make it , wherever and whatever that may be. 

New year is a good example of thinking the grass is greener somewhere else, as I’m under the impression that everyone has a wild and exciting time, the night of the year, yet when I reflect with friends on past New Year’s Eve celebrations they are often disappointing, tiring and the event ends being lackluster . The best nights, as we continued our discussion on this topic, were intimate suppers, a glass of champagne and home to bed soon after midnight…. well maybe a little dancing but often the best nights had less expectation  than New Year’s Eve glorified anticipation.

Carers can often feel excluded and isolated yet they can be enjoying the most profoundly intimate relationship of their lives which others miss out on. Sometimes ill-health and adversity brings out the best in families, friends and communities. I have witnessed the happiest of times within my environment because family and friends realise what matters in life. What I am trying to say is that as soon as I stop thinking about what everyone else is doing and concentrate on what is in-front of me I see the joy sitting in my lap.

Christmas is special for many reasons but the highlight for me is seeing family and friends together. It is a joyful time and food plays a small part although this year I over ordered on ham so there were complaints about eating ham for over a week, food may play a small part compared to people but our ham did dominate at every meal. We moved on from common complaint about the abundance of ham to an orchestrated debate on recipes for left over ham and in desperation to be rid of the ham we contemplated the pros and cons of ham curry!  I still like to think that It was being together that made the event, even if we only talked about the never-ending supply of ham. Ham united us in our quest to be rid of it  and I have also found that disability brings family and friends together  – united in their quest to persevere.

As Christmas and the ham recede into the past for another year I thought about how much I am grateful for, yes – there is life after an injury – it’s just a different normal. I read an article today and agreed with the sentiment “it’s not the disability that makes people feel disabled — it’s the environment”  Read more. Our family  has been fortunate to live in Australia, a country that addresses issues for people with disabilities. Australia has Medicare, and there are systems in place that ensure basic care provision. I am grateful to our local council for relaying concrete pavements over grass verges and providing road to pathway ramps, I am grateful that Universities have departments that address people with disabilities and their requirements within the institutions. I am grateful that public transport is required to be accessible to all. I am grateful that people with disabilities are considered, they are equal members of society and it is a real crime if their living environment is the single factor that discriminates or excludes them from living completely normally. I am fully aware that some people with disabilities in other countries could view Australia as being a greener pasture.

Australia ratified the UN Convention on Rights for Persons with Disabilities in 2009, some countries have still to commit to these basic principles:

The principles of the present Convention:

1. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
2. Non-discrimination;
3. Full and effective participation and inclusion in society;
4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
5. Equality of opportunity;
6. Accessibility;
7. Equality between men and women;
8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

The grass is greener, politically speaking, in countries that have committed and ratified to this UN Convention. There is an enormous amount to be done Worldwide for people with disabilities, advocacy is part of life if you are living with a disability.

As for us as individuals thinking the grass may be greener somewhere else…..I think that it is a delusion and a destructive delusion, everyone needs strong family and friends that positively reinforce the simple pleasures in life. There is no doubt that love and caring are the key to living well. If you love and you care – you are in the right place, no grass is greener.

My Offense at the Need for The Convention on the Rights of Persons with Disabilities

Emily and I took ourselves off to the cinema today to watch a romance. At the multiplex the theatre showing the chick flick wasn’t accessible because the lift had broken, so the wheelchair accessible options reduced our choice of movie, from the offerings we chose The Butler.

The film is historical fiction about Cecil Gaines who served eight presidents during his 34 year tenure as a butler at the White House, the civil rights movement, Vietnam, and other major events affecting this man’s life, family, and American society. See Film details here The final credits commenced with a dedication to all those involved in the Civil Rights Movement.

Emily and I set off home with our heads full of debate, how abhorrent to us today to witness, even in a film, colour discrimination, to know that our forefathers  thought colourism was normal, that this prejudice was accepted until recently, within my lifetime. I remember Martin Luther King being assassinated in 1968, I was six and had no idea about the wider implications of the event but I remember the gravity of the news and my mother’s tears.

It made me think about the rights of people with disabilities. It was as recent as 1981 to 1992 that the United Nations (UN) had a “Decade of Disabled Persons”. In 1987, a global meeting of experts reviewed progress and recommended that the UN General Assembly should draft an international convention on the elimination of discrimination against persons with disabilities. “Standard Rules on the Equalisation of Opportunities for Persons with Disabilities” were adopted by the UN General Assembly in 1993.  Only in 2001 did the General Assembly establish an Ad Hoc committee to consider the promotion and protection of the rights and dignity of persons with disabilities. Only at this stage were people with disabilities sought to implement and monitor the Convention. The Principles of the Present Convention are below:

• 1. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons
  2. Non-discrimination
  3. Full and effective participation and inclusion in society
  4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
  5. Equality of opportunity
  6. Accessibility
  7. Equality between men and women
  8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities

The UN treaty on the Convention on the Rights of Persons with Disabilities  was adopted on 13th December 2006, formal confirmation, accession and ratification is still, to date, awaited on in several countries. While I researched this information I was taken aback on two levels. The first shock to me was that anyone needed to write such fundamental human rights for people with disability and secondly that the treaty is awaiting ratification in some countries, Australia ratified on 21st August 2009.

I read a related article by Laura Sminkey which states the health issues associated with Spinal Cord Injury (SCI), they include chronic pain, deep vein thrombosis, urinary tract infections, pressure ulcers and respiratory complications. People with SCI also experience social participation and educational barriers impairing their quality of life. Laura’s article lists essential measures to improve survival, health and participation of people with SCI which include appropriate hospital treatment, community integration, access, education, employment. This article must be welcomed as much as  the International perspectives on spinal cord injuries which was developed in association with the International Spinal Cord Society and Swiss Paraplegic Research, and launched on this auspicious day, the International Day of Persons with Disabilities, 3rd December 2013. It is still a shock to me that these fundamental freedoms, to hospital treatment, integration, access etc, need to be documented as required for SCI as they are the basic rights for everyone.

Newness to this forum has revealed my steep learning curve to current legislation addressing persons with disabilities but I am struck with the same abhorrence I have to all prejudice and discrimination. It is offensive to me that the rights of persons with disabilities need to be spelt out to the general population, governing bodies and policy makers,  it is very sad that anyone with a disability has to advocate for primal, basic entitlements which I naively thought were the rights of every human. I thought fundamental freedoms, dignity, choice and mainstream integration be, without the need for a UN treaty or Convention, available equally to all but until this is recognized Worldwide I strongly support the United Nations Convention on the Rights of Persons with Disabilities.