Misgivings about motivational speaking

I’ve always felt uncomfortable around motivational and inspirational speakers, especially if they’re disabled. It’s not that I don’t respect disabled people who have done well, or those who have great stories to tell; far from it. I have a healthy dose of cynicism and I am of a generation who was brought up to believe that blowing your own trumpet was not the thing to do. But I am also deeply suspicious of hype and those who claim they have all the answers. Their take is often at a very facile and superficial level.

Call me cynical, but a lot of disability motivational speaking is designed to make both disabled and non-disabled people think that if that poor crip, blindie or whoever can do it then I should be able to too. This is often coupled with a slightly voyeuristic view of people’s individual impairments – non-disabled curiosity about the detail of disabled lives that becomes legitimised by listening to motivational or inspirational speaking.

Of course becoming a motivational speaker is not that simple. Some impairments, or degrees of impairment are more acceptable than others on the speaking circuit. You have to look good, and sound reasonable especially if you are female. A degree of life success is also necessary. Your ability to make the most of your experience depends on a lot of factors, whether you are disabled or not. If you had a good start in life, with comfortable beginnings, supportive family and good educational opportunities, whether you were born with or acquired your impairment, the personal insight you have, whether you are an optimist or a pessimist, and of course whether you are male or female – I’m almost willing to put money on the gender imbalance. Most of this is not acknowledged. The ways people overcome adversity are complex, and not always easily transferable. Hype won’t cut it in most cases.

I’ve done a fair bit of public speaking and I thought briefly of becoming a professional public speaker at one time, before reality very quickly asserted itself. Somehow I couldn’t take it, or myself seriously enough, and strong and serious self-belief in your role as a professional speaker and your message is a fundamental requirement. I’m way too old anyway.

Disabled people do, of course spend time in the public eye, as actors, singers or musicians, dancers, comedians and so on, They are practising their skills and talents, telling their own stories in their craft. I respect wise and skilled communicators such as the late Stella Young who spoke truth to power honestly in a way that any audience could relate to and understand. She nailed issues such as inspiration porn in a way that puts purveyors of it to shame.  She was creating meaningful change, rather than motivating people to do something like selling banal products, or exert themselves to greater individualistic heights on their life journey.

People who impress me are those who do great work or other things that are of value to communities or the world generally, or who make the most of what they have and maintain a balanced perspective. Such people don’t have to talk up their achievements. They speak for themselves.

It’s time professional speakers groups and bureaux modernised their view of disability.

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Filed under Disability Issues, Inclusion, Media, Miscellaneous, The Arts

The more things change the more they stay the same.

Ten years ago this August the United Nations completed the negotiations for the Convention on the Rights of Persons with Disabilities, (CRPD.) at the UN in New York. It was a huge relief that the wheeling and dealing was over, and we’d got much of what we wanted. Of course the real work was just beginning. But we all set off to party on that hot August night.

Disabled people in New Zealand were optimistic about the CRPD and the leading role New Zealand had taken in its development. The first NZ Disability Strategy was still fresh, the Sign Language Act was passed that year and the last of the big institutions was closing. The Disabled Persons Employment Promotion Act, which allowed sheltered workshops to avoid employment rights for many disabled workers, was repealed the following year. As a result of all of the above, New Zealand won the prestigious Franklin Delano Roosevelt International Disability Award for 2007.

Ten years later how has implementation of the CRPD fared?

The New Zealand government ratified the CRPD in 2008, and is showing willing to ratify the optional protocol. The government is positive about ratifying the Marrakesh Treaty, but needs encouragement. We have a disability rights human rights commissioner, disabled people’s organisations are working more closely with government, and the sixteen-year-old Disability Strategy is finally being reviewed.

But I have a sense of unease and disillusion in the disability community. As always money is tight. The Convention Coalition set up as part of the monitoring mechanism for the CRPD seems to have lost its funding and there aren’t seats around the government table for groups of disabled people who don’t have their own national representative organisations. The same old issues are raising their heads with depressing lack of progress among the now 24% of New Zealanders who are disabled.

  • There are problems with exclusion and the funding of “special” education.
  • Maori and Pacific disabled people are behind others in most social indicators
  • There is a small group of vulnerable disabled people who aren’t criminals detained without redress for significant lengths of time.
  • Disabled women in New Zealand still have no strong national voice of our own.
  • Access to the built environment, NZS4121 and enforcing legislation are desperately in need of review, reform and modernising.
  • There is no sign of legislative reform and change in mental health provisions and the Adoption Act, contentious at the time of the CRPD ratification.
  • Assisted decision making does not seem to be on the public agenda
  • Employment remains an intractable issue
  • There is no indication that the troubling inequity between health and ACC services will change
  • Disability data formerly collected with the census will be collected less regularly and there is unease about disability data and how it will be gathered.
  • Safety and fear of violence and abuse are common, and related community services are not dealing well with disabled people.
  • Government and other public web sites are not as accessible as they should be.
  • Disabled people’s representative organisations are stretched and under-resourced and need time and space to develop their own agendas.
  • Disabled people worry about negative public attitudes and behaviour and media coverage and portrayal.
  • The consultations on the draft disability strategy raised concern about the lack of a strategic approach and an individual rather than  a systemic and structural focus. Disabled people are also suspicious about accountability and impatient with the extended time frame for implementing the new strategy.
  • Act MP David Seymour recently referred to the 24% of disabled New Zealanders as “a worthy cause.”

There is still much to be done.

Years ago I used to say, half-jokingly, that I would be old and grey before there is any real substantial change. I am now old and grey, and, sadly, my facetious prediction seems to have come true.

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Filed under Disability Rights, Inclusion, Information Accessibility, Web Accessibility, Women

Taking charge of our own stories

A response to Me Before You

The past week has brought highs and lows in the disability world. On a high we saw the election of New Zealander Robert Martin to the United Nations Convention on the Rights of Disabled People CRPD committee, the first person with a learning disability to be elected to a UN committee ever.

Demonstrators outside the Embassy Theatre Wellington. The banner they are holding reads "Demand better stories #Survivethemovie #GetLaid #NotYourInspirationPorn. A male and female figure are silhouetted together in black. Photo by Zoë Deans

Demonstrators outside the Embassy Theatre Wellington. The banner they are holding reads “Demand better stories #Survivethemovie #GetLaid #NotYourInspirationPorn. A male and female figure are silhouetted together in black.
Photo by Zoë Deans

Things then took a turn downward with the opening of Me Before You, panned as a disability snuff movie by disabled people around the world. (The equally flimsy book of the same name was published in 2012.) Disabled people here joined the international outrage, protesting vigorously at cinemas around New Zealand.

Continuing the sickening downward trend, we heard about Ashley Peacock, and the ombudsman’s description of the autistic and learning-disabled man’s continued incarceration in “cruel, inhumane and degrading” conditions.

Three stories, two are real, one is anything but. Me Before You represents an ableist view of the disabled life. The real stories represent two extremes of disabled lives. Robert’s story is one of possibility, of a resilient and loving human spirit. The other real story is about an unresponsive and uncaring system reducing vulnerable people to a status of worthlessness.

Out of sight out of mind

The “out of sight out of mind” mentality is still alive and well in New Zealand. A while ago I visited the old Porirua Asylum museum. It was a sobering experience. I bought the published history of the hospital and related services and looked for the patients’ voices. There were none. In great sadness I mourned the nameless and forgotten people who were “put away”, unwanted objects in institutions which were supposed to care for them, often buried in unmarked graves and written out of history.

We have heard their voices only occasionally, through the wonderful early novels of Janet Frame, despite the revisionism that seeks to deny or at least minimise her searing experience of being labelled and treated as mentally ill. Mary O’Hagan’s recent book Madness Made Me is an excellent and constructive first-hand account of more modern mental health services, and Robert’s story, Becoming a Person is a powerful no-holds-barred life experience of abuse and systemic discrimination, but one that seizes with both hands the essential life-affirming humanity we all share, ultimately hopeful. Stephanie de Montalk’s exploration of pain in How Does it Hurt? would probably never have been published, despite its quality, if she were not already an established and highly respected author.

Such significant and excellent accounts are rare. Even books of academic interest are hard to come by in New Zealand and are prohibitively expensive in hard copy and as e-books. With the exception of Attitude TV, and one or two independent film makers and committed individuals elsewhere, the popular media and, importantly, our significant cultural institutions, are controlled and staffed by non-disabled people, and the stories they tell reflect that perspective

Growing up in a disability vacuum

Most disabled people in New Zealand still grow up seeing little realistic reflection of our own lives in the culture around us. I certainly didn’t. While my growing up was a while ago now, I don’t see much change. There have been one or two worthy attempts to introduce disabled characters into children’s books, with limited success. Even David Hill’s quality See Ya Simon is still from a non-disabled perspective, and the disabled character has to die as an essential part of the plot.

Mainstreaming disabled children and young people in the education system has had the unintended result of loss of community and cultural ties for some groups of disabled students.

Invisible stories

Story, in whatever form, is an important means of helping growing people find their places in the world. Growing up essentially without stories in one important aspect of your being is deprivation of an essential part of your own and the related human experience. It leads to a sense of disconnection, and of always being an outsider, whose concerns are marginal to those of everyone else.

Access is not enough

The absence of disabled voices telling our own stories on our own terms is surely the reason for the survival of the “fate worse than death” fearful view of disability. This is why we demonstrated for better, more real stories. The experience of disability is so much richer than the common bleak death-filled view. Disability is a prevalent, rich and universal thread in the human story. It is a thread to be explored, even celebrated. Our cultural institutions, including publishers, libraries, museums, galleries, theatres and others in the arts establishment must understand that access, while absolutely critical and necessary is not enough. We have to tell our own stories in our own voices, in our own ways.

A dedicated “cultural space”

Making space for us is key. We want a slice of the action and the resources. We want our voices to be valued and heard. We don’t want a ghetto, the outsider arts. We want to use our stories to effect change, to shine a light on dark places and forgotten corners. We want to tell our stories so we too belong. We will no longer stand for being incidental plot devices in the drama of others. Movies like Me Before You would have smaller and more critical audiences if our voices were part of a nuanced cultural mix.

A dedicated disability “cultural space” is necessary. A “cultural space” doesn’t necessarily have to be physical and, at its best it would be a broad, inclusive and innovative space for disabled people to explore disability culture/s while forging strong connection and challenging the broader cultural context. Such a space might be a physical or virtual online space, or both. The critical element would be disability-owned and led. This space and place could be the incubator for disability-led practice in a range of media to develop storytelling, sharing the stories disabled people know are waiting to be told.

We want our work to be taken seriously, to be no more or less therapeutic than any other arts practitioner’s. We want to shine light on disability history and disabled lives so that situations like Ashley’s are unthinkable because service providers and the public know better, and Robert’s human rights passion and work won’t be thwarted.

Other minority groups have cultural spaces. Places of celebration and pride and identity. What would a disability “cultural space” be like? If we could design them, where would they be? What would they be filled with?

Me before you is an abject example of the need for changing cultural values, for real stories, providing a quality balance to the pity parties and inspiration porn. It’s time for us, nearly a quarter of the population, to take charge of our own stories.

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Let’s fix the process

If you need New Zealand public sector websites to be accessible to use them satisfactorily then the “2014 Web Standards Self-Assessments Report” published in November 2015 won’t give you much comfort.

The good news, such that it is, is that the report’s authors appear to be circling in on the root causes of the problem.

“…NZ Government websites are designed and developed in a manner that tends to overlook the range of ways that people access and interact with web content.”

One has to wonder what goes through the minds of website owners, designers, developers and content creators if they “overlook the range of ways that people access and interact with web content”. Isn’t that the very meat and potatoes of the whole web development process? Accessing and interacting with content is the point of a website – and from a range of people. Quickly exposing desired content to an audience and protecting them from overload or unnecessary navigation is the nub of web design. It’s not primarily about creating a pleasing graphic and balanced palette (although that doesn’t hurt). And, it’s most definitely not about slavishly adhering to egregious visual excesses in the name of “branding”.

There is another puzzle here. Commercial (private sector) websites in general have some sort of sales intent. Their purpose is to in some way persuade the user of the value of their business or more specifically to try and sell the user some products or services. The public sector doesn’t have that sales drive: its purpose is to provide service and enable access and interaction using the convenience of the internet. In short, for public sector websites, it’s all about engaging with web content as part of providing a service to the public at large.

So what or where does the deficiency lie? The deficiency is in overlooking “the range of ways”.

In web design, the responsibility to cater for the range of ways that people access or interact with web content is within the scope of the user experience (UX) designer. A usual technique is to create personas. Personas are fictitious composites that are created to represent broad classes of the types of people who are expected to access the website. For example, the Ministry of Justice might expect lawyers, jury members, media representatives, litigants and judges to access its website. A persona could be created for each of these and through the design process the needs of each persona is factored in. The design can be subsequently validated by matching how well it is expected to deliver against the stated needs of each of the personas.

So far so good, but this is the point where I believe that the process fails. Why? Because in the development of the personas it is unlikely that consideration is made of potential impairments. Hence, the potential access (accessibility) needs aren’t embedded into the design process. In the development of some sites, some sort of accessibility review may take place but it is generally too late to make changes. The design signoff processes in the public sector can be so involved that the idea of repeating that process just looks too difficult, let alone having to make the explanations of why it wasn’t right the first time. (As an aside, in the time I’ve been consulting for AccEase I’ve never been asked to review the personas. I’ve checked wireframes, checking off against a range of ways the site will be accessed but pretty much always in the certainty that the range of ways of accessing a site hasn’t been designed in and certainly not included in the personas.)

The notion of developing personas including people with disabilities isn’t new. Shawn Lawton Henry, a renowned web accessibility expert,  has even provided example personas.

The “2014 Web Standards Self-Assessments Report” identified three types of people (personas?) that are not properly considered:

  • people who don’t use a mouse and instead rely on a keyboard or other input device and software to interact with web content
  • people with impaired vision
  • people who use special software to help them interpret and understand the structure and relationships between different bits of content on a web page (e.g. what’s a heading, what’s a list item, etc.)

It is up to User Experience designers to ensure that the full range of users are properly catered for.

Where else in the web development lifecycle would it make sense for accessibility to be addressed? Any time later is at severe risk of missing out a design consideration for a range of users. The classic approach is to “test it in” by doing an accessibility assessment once the build is complete and then apply the recommended changes. As noted above, this approach fails as designers are often unwilling to make changes and signoff procedures too cumbersome to achieve meaningful change. This approach also consigns “accessibility” to being an inconvenient afterthought, an encumbrance.

Process vs Technical change

Generally, the resolution to achieving a better state of web accessibility is considered to be the application of the technical elements that afford accessibility. However, I contend that it is a process change that will lead to a better state of web accessibility in our public sector websites. The technical elements do, of course, need to be applied but at present that fails to happen as there are often no explicit requirements generated in the user experience design.

In simple terms, let’s first think of the user (the ends) and then of the standards (the means).

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Filed under Accessible Engagement, Information Accessibility, Web Accessibility