disability – Echo Chamber Escape

PEOPLE: Doctor, Lawyer, Disability Advocate and Researcher. Role model.

October 11, 2021November 7, 2021 by Jahin Tanvir, posted in People

Dr. Dinesh Palipana is a leader.

We were simultaneously honoured and blown away by the inspirational story that Dr. Dinesh shared with our team at ECE. Here’s the story!

Can you tell our readers what a normal day looks like for you?

My days are highly variable. I work between the emergency department of the Gold Coast University Hospital, our research lab at Griffith University, the Disability Royal Commission and a number of other extremely rewarding things. Our emergency department is the busiest in the country. If I am working in the emergency department, I will generally get up about 3.5 hours before work. This is because it takes awhile to get ready due to the spinal cord injury. Well eating breakfast for example, I will attend to things like email and life admin. I’ll organise my calendar then as well. After that, on my way to work, I like to use it as a bit of chill out time to listen to music. However, I might take some phone calls then as well. At work, we will crack on with the business of an emergency department! The drive home from work is generally chill out time. After I get home, I’ll have dinner, shower, then crash.

What role does diversity and inclusion play in the work that you do?

It’s critically important. If the institutions that I worked in didn’t have a focus on inclusion, I wouldn’t be able to work. It’s that simple. But, none of it has come from laws, policies, or guidelines. All of it has come from inclusive attitudes. In my experience, attitudes are the biggest barriers. Attitudes are also the biggest enables. I’ve experienced both in my journey. I’m lucky to have some pretty amazing people in my life that are enablers.

Have you ever faced challenges in your professional career from others because of your identity and if so, how were you able to overcome that?

Definitely. The interesting thing is, until this year, I completely forgot that I was a migrant. I did a large part of growing up in Byron Bay. We went there as soon as we arrived in Australia. Byron Bay was an inclusive place. No one asked me where I was from. No one cared. We all lived together in happiness regardless of a huge socioeconomic spectrum. Therefore, being a migrant has rarely been front of mind. I’ve just felt human and Australian. I truly feel like we live in the lucky country.

The spinal cord injury is a different story. I experienced many barriers from attitudes due to it. I was nearly denied employment because of it. Senior doctors within our hospital, ironically from arguably one of the least physical specialties, said that they “don’t want someone with a spinal cord injury in the department”. A supervisor of the junior doctors said that I should leave clinical medicine to able-bodied people and not take their jobs.

I ignored them. At the end of the day, they can say what they want, but they are not going to the be the ones at the end of the road holding account of my life. It’ll be me. So, I kept going. Again, I was lucky enough to have a lot of supportive people. I celebrate them every day.

ADVICE FOR THE YOUTH

Surround yourself with people that celebrate you. Embrace everyone yourself. Don’t take an exclusionary approach. Don’t take up labels like black or white. We are all human. Be the change that you want to see.

Trade anger for compassion. Use challenges to grow. Energise yourself from frustrations. Most of all, remember, this is your life. These are your dreams. Don’t let anyone stop you.

Want to follow and support Dr. Dinesh?

Instagram: http://instagram.com/dinesh.palipana/

Twitter: https://www.twitter.com/dineshpalipana

LinkedIn: https://www.linkedin.com/in/dineshpalipana/

About the diversity champion:

(he/him) Dinesh was the first quadriplegic medical intern in Queensland and the second person to graduate medical school with quadriplegia in Australia. Dinesh is a doctor, lawyer, disability advocate, and researcher. Halfway through medical school, he was involved in a motor vehicle accident that caused a cervical spinal cord injury. Dinesh has completed an Advanced Clerkship in Radiology at the Harvard University. As a result of his injury and experiences, Dinesh has been an advocate for inclusivity. He is a founding member of Doctors with Disabilities Australia. Dinesh works in the emergency department at the Gold Coast University Hospital. He is a senior lecturer at the Griffith University and adjunct research fellow at the Menzies Health Institute of Queensland. Dinesh is a researcher in spinal cord injury. He is a doctor for the Gold Coast Titans physical disability rugby team. Dinesh is a senior advisor to the Disability Royal Commission. Dinesh was the Gold Coast Hospital and Health Service’s Junior Doctor of the Year in 2018. He was awarded the Medal of the Order of Australia in 2019. He was the third Australian to be awarded a Henry Viscardi Achievement Award. Dinesh was the Queensland Australian of the Year for 2021.

Image description: Dinesh is smiling at the camera with a blue scrub top with a stethoscope around his shoulders

VIEW: Merely Being compliant is not a point of difference to be proud of in the disability sector

April 14, 2021April 25, 2021 by Mylan Vu, posted in Views

As the disability sector is facing a range of headline-making issues, including a new NDIS Minister and pushback from the industry to proposed changes to the NDIS, this interview outlines experiences and insights from River Night, CEO and founder of Australian Communities, about how he is using his passions, lived experience of disability, and skills to drive change in the disability sector.

What currently drives you in your work?

After 24 years working in the disability sector, I’ve seen so many changes and so much worry, innovation, skepticism, new ideas, unclear agency directions but also, great feedback and solutions from people purchasing services and service providers. I go to work each day because I see a chance and opportunity to provide leadership and a platform for people to be heard and to be the voice of the sector for people who don’t have one.

I want to support and create ways to shape how Australia can get things right for its disability community. I am driven because I can see the opportunity to bring together thousands of service providers, people living with disability and diversity from all over the country. Creating a way for us all to establish events and have think tanks that can power out multiple solutions to what people see as problems and challenges in our sector.

I also get to do this from the position of a service provider, a person with lived experience of disability myself, a carer of family members with disability and diversity, an advocate and a professional. Therefore, if we can get things right, it affects me directly as well.

If I can facilitate events where, as a sector, we pick 10 key worries and problems direct from the people it affects from each event and produce multiple solutions to take straight back to the Agencies involved then that is a huge benefit to everyone involved and is the main thing that gets me up and out of bed every day.

What standards in the disability sector are you working on changing? Why?

I have developed a focus on raising the bar and delivering a more principles-based approach to quality standards. I have found you can have all the standards in the world but unless you are actually committed to them and are doing things for the right reasons, then it just doesn’t hit the mark. Without this we continue to see abuse, neglect and breaches of human rights. The key principles I try to focus on and have turned into a practice framework are Transparency, Commitment, Authenticity, Customer Centered Work, Contemporary Practice and Safety. Regardless of how you go about things I strongly believe if you, your staff and the stakeholders involved bring things back to good common principles, people will make the right decisions based on good foundations.

While privatisation has its pros and cons, I believe we need to treat the people that are accessing services as respected and valued customers with the priority to be to deliver a good service. To do this we need to invest more in professional development and raise standards.

A major standard I would like to focus on is service providers excelling and delivering a good product beyond basics. I have seen for too many years a sector where the point of difference between service providers is that they are compliant with legislation and standards as opposed to their competitor that is not. Being compliant with basic legislation or regulated standards is not a point of difference to be proud of. Compliance is a basic, expected first step. That is why I want to focus on raising the bar to deliver a disability community services sector we can all be proud of by really professionalising the sector and the way we work.

What are the impacts on our society as a whole when standards in the disability sector are improved?

I am a strong believer that people provide a lot of insight into themselves based on how a community or individual respond to diversity and the treatment of people that need support.

If a person is insecure, uncomfortable, judgmental, and lacking in respect for themselves and others, then their treatment of other people will be very much impacted. The treatment and value of people and the way we deliver support to them through the disability sector tells us a lot about ourselves. I have had no surprises from the horrific stories heard through the Royal Commission as I know these things happen and they continue to happen. Just like many people often have not had contact or understanding of the realities of Aged Care until a loved one goes through it, we often avoid recognising and talking about diversity openly and comfortably. It is harder for abuse and neglect to occur and continue when practices are transparent and there is real accountability along with frequent checks. As a culture it is essential for us to value and put focus on how we respond to disability.

What are your views on how the NDIS is currently designed?

There appears to be a disconnect from how it is designed and how it appears to be designed. At a broad level, individualised allocation of funding has been great for many people being able to have some choice and control over who they purchase services from.

After many years, I see many operational matters that could easily be fixed to help providers streamline common things like payment claims and portal features. Simple things that if in a private company, would simply be fixed by way of an IT team. Sadly, being a Government Agency, change is slow.

The plan review process is inconsistent with new delegates causing many issues. If a participant gets a good delegate, the process is simple. If they get a different one, even after many, many reports and supporting evidence, delegates seem to make decisions that just don’t fit and we have to go through the time and wasted resources of immediate reviews. A good system and approach would make some of these processes very simple. For example, a person with a significant lifelong physical disability diagnosed since birth, should not be asked to provide evidence that they still have a disability every review period and argue that they still need staff support. A simple review based on the recommendations of their own professionals that know them well is appropriate.

The introduction of independent assessors also adds to an already worrying design creating more inconsistency. It takes time, close professional relationships and case knowledge to assess and make recommendations for an individual. When a person has an Occupational Therapist, Psychiatrist, Speech Therapist and Guardians appointed, amounting to years of case history, it makes no sense introducing a third party without case history or any previous rapport or relationship to over-ride or replace significant professional input and recommendations. On the other hand, for a person that has no professionals or assessments already, an NDIS assessor would potentially be very helpful. This is the logical and individualised approach that the NDIS needs to demonstrate more of.

If you were head of NDIS for a day, what’s one thing you would change? Why?

The many systemic issues and problems of the NDIS and related Agencies cannot be fixed in a day but a good culture and some concrete action to demonstrate good faith could be done tomorrow. I would start by stating clearly that the NDIS recognises the challenges and systemic issues that exist, list them and show vulnerability in leadership through open and transparent language. There are huge benefits and opportunities through a National Scheme but also massive difficulties. It is not rocket science and people know that it is hard to ever get things perfect, so establish some regular flows of communication with the sector that are authentic, including talking about mistakes to ensure that people living with Disability are leading this Agency, sitting in the portfolio and making decisions.

I would mandate on my day of leading the agency, that the outcomes and recommendations would then only be considered once they have been reviewed and endorsed by each state and made up of approval bodies consisting only of people living with disability in Australia. This process would also need to be widely advertised and communicated to the community, so it is seen to be done as well as being done. I would mandate that only when each state can come to an agreement by these groups should policy, process and legislation be drafted. This may overstep the boundaries of the head of Agency but it could be a good start and I am not used to limiting my work to fit in a neat box.

About the expert

River Night is the CEO and founder of Australian Communities. With more than 22 years in Disability, Mental Health, Education, Child Safety, Youth Justice, Quality Systems and Forensic Settings in Government and Non-Government Sectors, as well as lived experience of disability, River Night is an expert in raising the bar and helping 24/7 NDIS Funded Participants.

River has spent two decades supporting participants living with disability, mental illness and complex behaviour, and working with participants who require coordination of a variety of stakeholders including Statutory Agencies.

By applying his own experience in disability, mental health, education, youth detention and child safety, River helps others to set and maintain better standards for the disability sector. He also brings expertise in licensing, forensic disability support, government and non-government roles to his position as a consultant and disability services industry leader.

River’s upcoming events: https://www.developingauscommunities.com.au/events/

Image description: Headshot of River from the waist up. River wears a black, collared shirt.

ADVICE: Business leaders need to think holistically about tackling ableism

April 6, 2021April 4, 2021 by Mylan Vu, posted in Advice

Recent research by the Centre of Research Excellence in Disability and Health has found that “about two thirds of people with disability have reported some kind of violence”, and “women with a disability were more than twice as likely to report sexual violence in the past year compared to women without disability”. The horrifying stats highlight the reality that ableism is ever-present across all aspects of our society and causing real damage.

In this interview, Ainslee Hooper, Anthropologist & Disability Consultant, shares her expert advice and experiences regarding ableism in Australian workplaces, how ableism can and should be managed, how it can be mitigated for future generations, and why a holistic approach is required to tackling ableism.

What are the most commonly overlooked forms of ableism you’ve noticed in the Australian workforce?

I have found the most commonly overlooked forms of ableism are often covert. For example, people are discouraged from going for opportunities that come up in the workplace because superiors have already assumed the individual cannot perform the job like their peers. Still, there is no evidence to show this is the case. It is due to stereotypes that persist.

Another common one has been people with disabilities being excluded from opportunities because the workplace has not considered how things could be done differently. The lockdowns resulting from COVID19 and how the Australian workforce pivoted to keep things running were a real wake-up call. Many workers with disabilities have previously been told accommodations would be too difficult to implement, not logistically possible, etc., and yet these accommodations have been implemented due to the pandemic.

The final one, which is surprisingly huge, is the lack of disability in diversity plans. With disability being the largest minority group, it amazes me that disability is still glaringly absent from many plans. I have found the main reason for this is people are scared to touch disability, so they leave it. This solves nothing and instead allows problems to persist. There are diversity targets for the employment of people with disabilities, but that alone does nothing.

How has ableism in the Australian workplace evolved in the last few years?

I want to say things have evolved, but we have such a long way to go. We currently rank 21^st out of 29 OECD countries regarding people with disabilities participating in the workforce. So, there are not only issues that persist within the workforce for employees with a disability but also cases of people with disabilities gaining employment, which is a whole other conversation due to the Disability Employment Services system’s flaws.

What has been the pandemic’s impact on ableism and how people with disabilities are viewed in the workplace?

As mentioned previously, there have been considerable changes in the workplace as a result of COVID19. The biggest ones that have benefited people with disabilities are remote working and meetings via technology such as Zoom. Their peers without disabilities have also benefited from these and, as a result, are more aware of the issues faced by people with disabilities. Although for a business that does not have an employee with a disability, this may not be as obvious to them.

How are you working with business leaders to combat ableism?

I have been pleased to see businesses being proactive in reaching out to get guidance on improving the experience for not only workers with disabilities but also for their consumers with disabilities. I take a holistic approach, so I’m working with businesses in various ways and at all levels, from top to bottom.

I encourage all businesses I work with to implement a Disability Action Plan, making them aware of issues not previously considered. Working closely with businesses to assist them through this process, they soon see how easy it is to combat ableism and the gaps they need to focus on.

I am also doing speaking engagements to talk about my lived experience. I find storytelling is the most effective way of making people understand the problems and the impact these problems have on people with disabilities. I am always pleased to see people motivated to create change as a result of these sessions.

Many businesses have committees or groups focused on disability-related issues. I perform audits to identify any problems impacting these groups’ smooth functioning or committees to address critical problems effectively.

Finally, I’m also helping businesses identify issues for consumers with disabilities by talking with consumers about their experiences in a confidential manner to provide businesses with insights to gaps and recommendations on improving the experience. My approach to combating ableism is holistic, and I encourage businesses to think holistically too.

What are the most common challenges you come across in your work? Why do you think this is?

There are two common challenges I have come across. The first is lack of knowledge. One of my favourite sayings is from Anais Nin – “We see things as we are, not as they are.” There is so much unintentional ableism out there. When people hear the word ‘ableism,’ they often get defensive. It’s rarely intentional but stems from a lack of understanding of what the experience of disability is really like. The problems people with disabilities face are rarely what businesses think.

The second common challenge comes down to money, which brings me to another favourite quote, this one by Olivier Nourry – “Ableism is the natural child of Inaccessibility.” I still often hear businesses say providing for accessibility is not always feasible due to financial constraints. While this is a reality for many, and I don’t dispute this, I would love to see a shift from expense to investment because it allows more people to access your business. I am currently in talks with various parties to discuss how businesses can overcome these issues. Watch this space.

What’s your ambition for how ableism is managed in our workplaces?

For starters, we need more disability representation in the workforce. People with disabilities must be the ones who are leading addressing the problems. However, we can’t manage ableism from within workplaces unless we also combat ableism from the outside. My ambition is to encourage and assist businesses in fighting ableism at all levels, and it doesn’t have to be all at once. It’s a slow process, but we can get there. My ambition is to help businesses see the possibilities and the wins this will bring to their customers and society.

About the expert

Ainslee Hooper is an Anthropologist & Disability Consultant with a lived experience of disability as a lifelong wheelchair user. Her business, Ainslee Hooper Consulting helps businesses and organisations identify and remove invisible barriers to reduce the risk of ableism and be more inclusive and accessible. She is also available for speaking engagements tailored to a wide variety of audiences. Ainslee is currently completing a Ph.D @ Deakin University with her thesis examining the experiences of people with disabilities in Geelong during COVID19. You can contact Ainslee on info@ainslehooper.com.au

She also has a newsletter you can subscribe to by jumping on her mailing list at https://ainsleehooper.com.au

Image description: Ainslee is sitting in a garden in a mustard-coloured sweater. She has red hair, hazel eyes, and is wearing glasses.

ADVICE: Have a hobby based on your dream industry or job

February 6, 2021 by Mylan Vu, posted in Advice

There’s no denying many people living with disabilities face obstacles entering the workforce. While many lack confidence from the challenges their disability can bring, workplaces often don’t have the understanding and acceptance to accomodate for them.

Lake Munmorah-based Jarrad Taylor is on the autism spectrum and has always had an extraordinary passion for garbage trucks, even as a 10-year-old boy. Fast forward 8 years and the 18-year-old has now landed his dream job as a Bin Puller and Runner at Cleanaway, Australia’s leading waste management organisation.

In this interview, Jarrad shares his experiences and advice for others with autism looking for work.

When and how did your passion for garbage trucks begin?

Ever since birth really! My first interaction was when I was a toddler, trotting out to the driveway to explore after I heard the roar of a truck out the front. I was fascinated by how tall and long the truck was, and especially interested by its automated arm picking up my garbage bin. Since then, I’ve become really involved in the industry. I began to know the drivers that did my street, and then nearly all drivers on the Central Coast! The automated arms are the piece of technology that really kickstarted my passion. It seemed so unique and different compared to all other types of trucks on our roads. Garbage trucks in general, are a very cool, loud, and interesting type of truck.

How has that passion evolved over time?

After I started pursuing my passion, I decided to start my own YouTube channel (JT Garbo) where I’d document the operations of these trucks. I started, and views and subscribers sky-rocketed. I soon realised that there is a huge market for this type of content on YouTube. Back when I started, I was producing basic videos of the garbage trucks in my street. As I got to know many more drivers over the years, I would then start to venture into other suburbs and cities to film garbage trucks operating in those different scenes and environments. In 2014, I was in the Express Advocate newspaper, at the Somersby Depot (where I now work for Cleanaway – where I’ve dreamed to work) where they let me on my birthday wash my favourite garbage truck. Since I entered adulthood, I still carry out filming the trucks alongside my new dream job.

I’m now living up to the name of JT Garbo as a garbo with Cleanaway Somersby, providing effective and sustainable waste services to the Central Coast.

What is JT Garbo and what makes you excited about this YouTube channel?

JT Garbo is a channel I started eight years ago, and since then, I’ve been filming garbage trucks on the Central Coast and surrounding councils. I plan on doing so for the rest of my life, alongside my job as a garbo at Cleanaway. The fact of knowing you have a fanbase who are excited to see your content is one of the things that warms me up inside and makes me want to continue to do it; communal support is overwhelming. Profit from doing YouTube is decent as well, but it’s not all about the money, it’s about sharing my hobby to the public. So far, my channel has been seen 600,000 times across 92 countries around the world. I have got to know and make friends with many of my subscribers and viewers, they love what I do to the point where I have also inspired them to start filming garbage trucks.

I love going out and filming the garbage trucks. It’s like bird watching or trainspotting, but with garbage trucks! I can go deep into the models of the garbage trucks, the trucks’ numbers, their manufacturer and their specs. I can even look back into the history of the industry, researching waste companies and operations from by-gone eras.

How did you turn your passion into your job?

I had some local garbos approach me one day in my street while they were working to let me know an opening for a starting role as a garbo, an offsider, had opened. Within a very short time after applying, I had heard back and was successful. I believe the hobby and my YouTube channel went to show my dedication, and I do believe this helped me reach my dream job as a garbo at Cleanaway.

Were there any challenges during the job application process? Tell me about working with Cleanaway.

The job application process was very direct, very transparent and straight-forward – especially for me, everything made sense as I had been following how the industry operated since I was young. Cleanaway has welcomed me with open arms and I’m so grateful for that. This is more than a job, a workplace, this is my happy place, this is my childhood dream come true, and I have loved working as a garbo since I started here at Cleanaway. It is a fantastic industry, you get to be outdoors, you meet people in the community and you do a community service. It empowers me every day, I just love it so much.

What’s your advice to others with autism who are looking for work?

Follow your dreams, go big, have a hobby based on your dream industry or job, and it may pay off one day, it clearly did for me, and I am now living the dream job. Never doubt yourself, experiment and always be nice. You’ll get there in the end if you go the extra mile and love what you do.

About the expert

Jarrad developed a fascination for garbage trucks when he was just two years old. Instead of socialising with other children, he’d find comfort in playing with his toy trucks and exploring everything there was to know about the real vehicles – from tech and functionality, to the history of Australia’s waste management system. At 10 years old he launched a YouTube channel, JT Garbo, that houses more than 600 videos today with a total of 500,000 views.

Image description: Two people in high-vis yellow shirts, and navy paints standing with their arms around each other and smiling in front of a bright blue CLEANAWAY truck.

ADVICE: Employing people with a disability is not about hitting diversity targets

December 15, 2020 by Mylan Vu, posted in Advice

The below is a guest post from Natasha Price and Adam Sheppard, Founders of InvincAble A.I.D.E (Accessibility, Inclusion, Diversity & Education).

Inclusion in the workplace has come a long way in the last few years, however, still has a long way to go. People with disability want to be contributing members of society in the exact same way as their non-disabled counterparts so it is imperative that we see sizeable and continuing improvements in this area. Whilst we understand this may be the only option for some, gone are the days when all people with disabilities were encouraged to sit around at home living off government benefits, without the means to chase their dreams and aspirations.

Employing people with a disability has a 2-fold effect. Not only does it help people with a disability find gainful employment, offering financial freedom and independence, but by making a business more accessible and inclusive, organisations would also be widening their customer base to the one in five people in the community with a disability.

Huge underemployment of people with disabilities (52.8% employed, compared to 82.5% of the general population) often pushes them onto unemployment benefits or setting up their own businesses. People with disabilities are 40% more likely to be self employed and are, in fact, three times more likely to remain in business than their non disabled peers. This is often due to the lack of opportunities in the workforce offered to people with disability, plus the lack of awareness and understanding which employers may have of the benefits of employing those living with disability.

People with disabilities have often been pigeonholed into certain types of employment, such as call centre work or the fast food industry, instead of being encouraged to follow their passions simply because of accessibility and inclusion issues within the workplace, and a general lack of understanding from wider society. Unconscious bias is real, and it is still alive and well in society today, however, this is rarely the fault of the individual. Unconscious bias comes from years of conditioning and childhood influences which may have been reinforced throughout life.

If an individual has had very little or no contact with a person with a disability, they will come with a preconceived notion of what that person might look like, act like or what that person would have the ability to achieve. These preconceived ideas or biases can be strengthened by the bombardment of negative connotations within the media and arts.

Please understand that employing people with a disability is not about hitting diversity targets but rather the benefits that such inclusion would bring to an organisation. Don’t take on a person with a disability purely because they are disabled but take them on because they could posess multiple transferable skills, equal to or better than an able-bodied employee.

Let’s not forget, if you have an employee with a disability and your business has become more accessible and inclusive as a consequence of this, as an organisation, you will be able to reach a wider demographic of customers as disabled individuals will now be able to access your products and services where they potentially may not have been able to before.

The other obvious benefits of inclusive workplaces could be:

Allowing individuals to showcase their skills and ability, and utilise experience they may already possess, whilst demonstrating to the wider community that disability does not equate to inability.
It allows customers and other staff members to have a greater connection with a more diverse range of individuals within their community and, therefore, a greater experience of the wider world.

In some of the cases where a business is not accessible the smallest of changes can often make the most significant difference. For example, changing the layout of a store so that items are easier to reach for a person of short stature or a wheelchair user, more intuitive to find for a person with visual impairment, or just being aware of the space within store so that mobility device users can easily navigate around it.

Employing a person with a disability, or welcoming them into your business as a customer, may seem like a daunting prospect, however, there are plenty of advisory and support services available which can help an organisation get started in this process. It is important to point out that consulting with those who have lived experience, not purely academic knowledge, can be the difference between a true understanding of things that may be introduced which can make a real and tangible difference to people with disabilities, and possibly only covering the regulatory side of things and, sadly, government code is often not in depth enough, nor is it best practice. This can still exclude many.

About the experts

Natasha Price is an elite wheelchair athlete, entrepreneur, speaker, blogger, published author, Queensland State Champion, international marathon winner and Gold Coast Women of the Year finalist from the Gold Coast, Australia. She is the founder of InvincAble, a products based business that exists to empower those living with disability and long term health conditions to live fun, fulfilling and active lives.

Adam Sheppard is an athletics coach, personal trainer, retired para athlete, former Australian record holder, speaker and entrepreneur. He was born and bred in the Sunshine State and lives with his wife of ten years, Christy, and their three year old son, Fletcher.

Together, Natasha and Adam founded InvincAble’s sister organisation, InvincAble A.I.D.E (Accessibility, Inclusion, Diversity & Education), where this unstoppable team utilises their decades of lived and work experience in the field of disability to empower, inspire and create the kind of change that will have a meaningful impact on diversity and inclusion worldwide.

Image description: On the left, Adam is sitting in a wheelchair looking to the Natasha to his side. He wears a grey polo shirt and is smiling. On the right, Natasha is sitting in a wheelchair in a white polo shirt and grey pants. In the background is a pond surrounded by greenery and trees.

PEOPLE: Josh celebrates one year at Officeworks

November 30, 2020December 5, 2020 by Mylan Vu, posted in People

Josh, a 28-year-old South Australian, recently celebrated his one-year anniversary with Officeworks and he couldn’t be happier.

“I still crack a smile every time I see the Officeworks sign or hear the jingle in the background,” he says.

Josh lives with Asperger’s syndrome, learning difficulties and an immune deficiency, that affect his concentration, communication and causes regular pain. With no previous employment history, Josh began to believe no one would hire him.

“I didn’t know how I was going to get a role without any experience, and it felt like no one was giving me a chance.”

That’s when Josh found WISE.

“I’ve met with multiple employment agencies in the past and WISE has been a lot more helpful because they don’t see my disabilities as a hindrance. They have taken the time to get to know me as an individual and help me uncover my skills so I can be a real asset to a company.”

WISE has a strong partnership with Officeworks, placing numerous hard-working customers in stores throughout the country. The team set Josh up with an interview at the Croydon store and he was hired shortly after.

Josh has proven to be a stand-up team member and completes day-to-day tasks with ease – stacking shelves, replenishing stock, assisting customers and loading trolleys.
Known by his peers as a hard worker with a great team spirit, Officeworks Croydon Store
Business Manager, Doug Williamson, says his positive attitude is infectious.

“Josh loves working at Officeworks and being a part of the Croydon team. It’s always great to see someone as passionate as him working here. He makes it a habit to arrive early and starts every one of his shifts with a smile.”

Now with 12-months of steady experience under his belt, Josh’s confidence has grown
immensely. He feels better equipped interacting with peers and loves meeting new customers and helping them with their shopping.

“I come across all sorts of people from different cultural backgrounds, some who have
disabilities too. I consider it my duty to make everyone feel welcome and treat all my customers equally.”

Josh is extremely proud to be part of the Officeworks family. By sharing his employment journey and achievements, he hopes to encourage people living with a disability to believe in themselves and practice persistence when it comes to joining the workforce.

Despite the challenges COVID-19 has brought to those seeking employment, Josh has
successfully maintained continuous work. As the retail sector innovates and adapts throughout these challenging times, Officeworks has been able to keep empowering its employees, keeping them busy via click and collect services.

“My life has changed for the better since starting my role. I look at other people losing their jobs during COVID-19 and I’m so grateful that Officeworks took a chance with me.”

About the expert

28-year-old South Australian local Josh is a hard working person who champions team spirit amongst his fellow team members. Living with Asperger’s syndrome, learning difficulties and an immune deficiency, Josh recently celebrated his one-year anniversary at Officeworks and couldn’t be happier.

Image description: Josh is holding a cardboard box in a room full of colourful folders, boxes, pens, office equipment and more. He is smiling, wearing glasses, wearing a long-sleeved blue Officeworks jacket over a blue Officeworks polo shirt, and has short, brown curly hair.

PEOPLE: How Natasha Price is empowering people with disabilities

October 30, 2020January 9, 2021 by Mylan Vu, posted in People

Natasha Price, elite wheelchair athlete and entrepreneur, saw an immediate need for services that helped empower people with disabilities and also equipped businesses with the tools and knowledge needed to build inclusive workplaces. In this interview, she outlines why she launched InvincAble and what makes their approach to diversity and inclusion effective.

Why did you start InvincAble?

InvincAble was born out of a need for those with lived experience of disability to empower others living with disability or long term health conditions and make a tangible and meaningful impact on their day to day lives. We do this via offering a unique business model that includes numerous services such as diversity and inclusion training, accessibility consulting, disability education, advocacy, workshops, motivational speaking, product development and disability awareness programs.

At InvincAble we use our distinctive brand of humour and decades of life experience to appeal to the hearts and minds of the wider community so that they feel inclusion and accessibility is an absolute necessity for society as a whole. We encourage adaptability whilst pursuing equity for all, and strive to demonstrate this to both the abled bodied and disabled community.

What was missing from the market that gave you confidence your organisation was needed?

We felt that many organisations put inclusion and accessibility into the “too hard” basket or are scared off by the huge task ahead of them in an area they often do not have personal experience in. Often, organisations have rules, regulations and high costs militantly spouted at them, without being given the opportunity to empathise and connect with the people that these issues affect most.

At InvincAble we believe in tackling these problems head on but in a positive manner, whilst tackling the small steps that can be taken to make people more inclusive and accessible in their thinking. We hope that by showing the highs and lows of living with disability, we can make everybody realise the benefits of being more aware of the needs of those living with one.

Diversity and inclusion training has recently been getting mixed responses from experts and professionals regarding its effectiveness. What’s your view on this?

We believe that it entirely depends on the approach of the organisation providing the training. If the training is sterile, not interactive, does not truly demonstrate the realities of living with disability and the ramifications of not becoming more inclusive of all abilities, then it is unlikely to be impactful.

If somebody has never been touched by disability it is extremely hard for them to visualise and understand how important inclusion and accessibility is. More often than not, this is not due to a person’s unwillingness to embrace these concepts, and often they may feel they already do, but more due to deep seated unconscious biases or a lack of awareness, plus a belief that following the rules and regulations will be enough; sadly it generally is not.

In our experience, if you capture people’s hearts and minds, they become more invested in your cause, and are more willing to make tangible change.

Through your accessibility consulting work, what is the biggest challenge you’re seeing organisations facing? What do you believe are the root causes of this challenge?

When it comes down to it, the major challenge faced by organisations is awareness. Often organisations are unaware that they even need to make changes, and may feel that they are built to code, so they have sufficiently made provisions to provide access. Sadly, code provides basic means, however, still is not gold standard and does not provide access to many in the community.

There is also often a lack of awareness of the funding that is available in order to make business accessible which could seem daunting, especially to a small business owner.

Also, by making premises more accessible, this would open up any organisation to a large new number customer base/audience (4.3 million people in Australia alone live with a disability).

Finally, many organisations are unaware how to even just get started with providing better access, this is often due to government’s lack of prioritising and promoting access and inclusion to the business community.

About the expert

Image description: On the left, a man is sitting in a wheelchair looking to the woman (Natasha) to his side. He wears a grey polo shirt and is smiling. On the right, Natasha is sitting in a wheelchair in a white polo shirt and grey pants. In the background is a pond surrounded by greenery and trees.

ADVICE: There is no excuse for not hiring people with a disability

October 17, 2020February 6, 2021 by Mylan Vu, posted in Advice

As the global pandemic has forced many businesses to re-assess how they build and foster inclusive workplace environments, this interview with Karen Knight, Vision Australia General Manager Client Services, covers how businesses can be more inclusive for people with disabilities and the value of looking past stereotypes and misconceptions around working with disabilities to develop truly diverse workplaces.

Historically, what have been the biggest barriers to employers hiring and retaining talent with disabilities?

There’s no doubt that in the past workplaces were more inaccessible than they are now, particularly when it comes to technology.

But given the wide range of assistive technology that is available today, along with government funding to help individuals and organisations access it, there is no reason this can continue to be used as an excuse for not hiring people with disability, let alone putting them in positions of leadership.

What have been the biggest barriers for talent with disabilities in finding work and growing in the workplace?

We know that people with a disability are underrepresented in the workforce. In terms of the blind and low vision community, just 24% of people who are blind or have low vision in Australia are in full time employment.

More than 60% of people who are blind or have low vision believe employer attitudes are one of the main barriers to full-time employment and around 50% believe they have not been hired due to living with blindness or low vision.

Workplace accessibility, whether it be the physical work environment or systems and technologies used, is also a major barrier. 43% of people who are blind or have low vision believe workplace inaccessibility impacts their ability to find work.

What are the discrepancies between these perspectives? How can we overcome them?

There needs to be a shift in employer attitudes around hiring people with disability.

Bringing people with disability into your workplace doesn’t have to require large changes and employers need to be proactive in terms of understanding what is available to support them doing this.

Vision Australia can provide advice and support around making their workplaces accessible and inviting for people who are blind or have low vision, and government funding schemes like Job Access can fund equipment and workplace modifications that may be needed.

A true commitment to diversity will strengthen a workplace and there is exceptional value in an organisation having their workforce demographics reflect the differences in the community.

How has COVID-19 changed this landscape and the workplace for people with disabilities?

Many workplaces have had to quickly adapt to most, if not all of their staff, working remotely. At Vision Australia, we effectively moved our entire work force of around 800 people to remote working in a matter of days.

Remote working can open up opportunities for people who are blind or have low vision, or live with any other disability, but COVID-19 has also shown that organisations have the ability to adapt to different circumstances.

We would hope that employers recognise this and understand that making changes to foster the employment of people with disability is not prohibitive.

Considering the way the workplace is changing, what can businesses can be doing now to ensure their workplaces are welcoming and accessible for people with disabilities, particularly those with vision impairment?

Many organisations will claim to have disability employment targets or similar, but these are relatively tokenistic unless there is an actual plan in place to achieve them.

At Vision Australia, one of our organisational targets is to have 15% of our workforce made up of people who are blind or have low vision and we have a number of structures in place to achieve this.

This impacts our recruiting process, the technology and systems we use at work, the training we provide and education we provide to our sighted employees.

All of this creates a workplace where people who are blind or have low vision are valued and able to work independently and collaboratively alongside their sighted colleagues. Importantly, it also creates a workplace where people who are blind or have low vision want to work.

About the expert

Karen Knight is the general manager of client services at Vision Australia, where she has provided leadership for the past 13 years.

Karen has been blind since birth. She is a registered psychologist with previous experience in mental health, youth suicide prevention and mental health promotion. She has worked largely in the health sector and for prominent community organisations.

For the past twenty years Karen has been involved in advocacy in the blind community including twelve years as a Director of Blind Citizens Australia, the peak advocacy body for blind and vision impaired people. She has also been involved in a range of disability sector committees and served on the Board of Vision Australia.

Karen is a specialist on My Aged Care, psychological support for people who are blind or have low vision, and delivering services that support the blindness and low vision community.

Image description: Photo of Karen in a patterned blouse and black jacket in front of a white wall. She is smiling and looking to the side. She has short blonde hair.

VIEW: Why Sally has an ‘Eye to the Future’ with Blind Citizens Australia

October 11, 2020December 5, 2020 by Mylan Vu, posted in Views

The below is a guest post from Sally Aurisch, General Manager of Projects and Engagement at Blind Citizens Australia.

‘Diversity’, ‘disability friendly’, ‘inclusive’ – these are all terms so freely thrown about these days, but what do they actually look like in reality? And how do they play out in practice?

My name is Sally Aurisch and I work for Blind Citizens Australia (BCA) who are a peak disability body, representing the needs and interests of people who are blind or vision impaired across Australia. People just like me.

We strive to meet these objectives, not just on paper but in every aspect of our operation every day.

The team of 17 is led by CEO Emma Bennison who is blind. Emma moved into the role over three years ago and since her arrival has focussed her efforts on strengthening the organisation’s team, leadership and profile. Of the staff, 75% of us identify as having a disability – a ratio that far outweighs many organisations. The ratio remains similar at both leadership and non-leadership levels.

The organisation is governed by a board of directors who all have lived experience of blindness and vision impairment, with experience in community services, accounting, HR and education.

Our strong disability-led organisation ensures that it strives for best practice in all that it does. From implementing remote working opportunities over two years ago to ensure staff were sourced based on suitability, not location to customising an accessible phone system that can be used by staff anywhere and building a customised membership database that ensures all staff have access to a system that is accessible and functional. That was a large project that I had the pleasure of working on, in conjunction with some wonderful champions at KPMG, and you’d be surprised at how inaccessible so many out of the box CRM’s are!

Our organisation recognises that there is a strong need to increase the employment opportunities available to people who are blind or vision impaired. While Disability Employment Services go some of the way to addressing this need, there are still strong misconceptions and perceptions that result in people who are blind or vision impaired having one of the highest unemployment rates in the country.

It is for this reason that we created the ‘Eye to the Future’ project, funded by the National Disability Insurance Agency’s Information, Linkages and Capacity Building grants program.

I head up this project, along with a fabulous team, and we have sought to change those misconceptions about the ability of people who are blind or vision impaired to undertake sustainable, meaningful employment of all types.

We have filmed four ‘day in the work life’ videos showcasing the careers of four people who are blind or vision impaired and providing an insight into their daily lives, particularly how accessible technology allows the completion of so many of their tasks.

We also created a series of paid internships, where candidates who are blind or vision impaired were matched with employers to undertake a 6-month internship program.

The project will soon culminate in a series of ‘you can’t ask that’ style workshops where HR business partners, diversity and inclusion managers and anyone else with the ability to influence hiring decisions will be invited to come along to a webinar, meet the stars of the ‘day in the working life’ video’s, as well as staff from BCA and discuss the topic of people who are blind or vision impaired in the workforce; no question or topic will be off limits during these sessions.

You can learn more about this project, and watch the videos via a site specifically created for this project, www.eyetothefuture.com.au

About the expert

Sally Aurisch is the General Manager of Projects and Engagement at Blind Citizens Australia and is also vision impaired herself. She has over 15 years’ experience working in the community and not for profit sector and has developed a love for creating and overseeing projects that focus on engaging people with each other and their communities.

Sally is currently completing a Bachelor of Social Science (Organisation Management) at the University of New England, where she also works as a Peer Assisted Study Session Leader.

Outside of work, Sally helps coordinate her local ‘Stingrays’ program; an adapted version of Nippers that aims to teach surf awareness skills to kids and teens with disability.

For more information about Blind Citizens Australia, please visit www.bca.org.au

Image description: A young woman with light brown hair in a white dress smiles against a backdrop of red bricks and a window.

ADVICE: How to build workplaces that are welcoming to people with disabilities

October 6, 2020 by Mylan Vu, posted in Advice

The below is a guest post from Tom Appelbee and Graeme Firth from Fenetic Wellbeing

By law in the UK, all employers must treat all job applicants equally, regardless of any disabilities they may have. With this in mind, it is imperative that workplaces everywhere are prepared to welcome people with disabilities.

All over the UK there are workplaces that are physically inaccessible to those with disabilities, which makes applying for such jobs out of reach.

To combat this, workplaces must implement changes, however big or small, to create an accessible workplace.

Below are some of the changes that could be made to make the workplace that would help with welcoming people with disabilities:

Building access points

The first port of call is to think about every single access point into the building, and the outside parking area. The first thing is to assess whether all access points have stairs or not. If so, it is vital that an access ramp, stair lift or access lift is installed. Access points to a building are the first thing an employee will encounter, and if access is unfairly presented towards a person with disabilities this will cause an instant bad impression of the workplace.

Secondly, it’s important to ensure the building car park has dedicated disabled car parking spots near the entrance. Ideally, a workplace will have at least 4 car parking spaces accessible to those with disabilities.

Inside the workplace

When inside the building, it’s important to question the accessibility of the hallways and walkways leading to the office itself. If there are obstacles in the way, such as tables chairs, or decorative accessories, these need removing to create more space. This is important for wheelchair or mobility users especially, as they will need ample room to navigate to the office, particularly if the hallways are narrow.

When in the office, the same applies. There should be sufficient space for wheelchairs and mobility scooters to get around. Therefore, tables, desks, chairs, and storage solutions should be spaced out effectively for easy accessibility. In terms of desks, these should be pre-assessed to ensure wheelchairs and mobility scooters can fit under them, so the employee can stay seated in the mobility aid whilst working.

In terms of kitchen access, all kitchen essentials should be reachable from a wheelchair or mobility scooter, such as plates, glasses, tea, and coffee. Instead of putting them in higher kitchen cupboards put them at a lower level. As well as this, there should be specific toilets that are fully adapted to accommodate those with disabilities.

Other things to think about include installing equipment and aids for those who are deaf or visually impaired. Getting all staff to consider signing up to the British Sign Language course could make life easier for a deaf employee, and it would also be a great life skill to have.

Those with a disability such as Asperger’s may benefit from having a quiet space to escape, so, making hot desking an option could make employees feel more comfortable if the working environment is flexible.

Workplace culture

It is important that those with a disability are welcomed into the team, just as those who are abled would be. Treat those with disabilities respectfully, as you would any other employee, but also make sure you are aware of their disability, without being patronising. Make sure they are part of the team, just like everyone else! Those with disabilities can join in with all workplace activities and team bonding sessions, however, these may have to be adapted slightly.

Always make sure employees with disabilities feel heard. When they start the job, ask if there is anything they need in terms of equipment or support that would help them fulfil their job properly. Ask if they have noticed anything that needs working on in the office, such as more team activities or even more free hot drink options! Make sure they know their opinion is valued. Have regular meetings with them to give yourself and them the opportunity to highlight any updates within the company, anything positive that the employee has done or any concerns you may need to raise.

Extra support

If there are numerous people with disabilities in your workplace, it could be worth considering external support, to ensure you are giving them the correct support that they need.

For more information on mobility aids for physical workplace support, please contact Fenetic Wellbeing.

About the experts

From our humble beginnings as two friends working out of an attic in Keighley, to an award winning business serving over 100,000 satisfied customers nationwide.

Since 2009 we’ve collected awards including Entrepreneur of the Year, Business of the Year, and Independent Trader of the Year at the Keighley Business Awards.Here at Fenetic Wellbeing we make it easy to buy mobility products online. We work hard to provide a range of products that are high quality, fairly price, and backed by a level of after sales care you can rely on.

Image description: Tom Appelbee and Graeme Firth from Fenetic Wellbeing with some of their products.

PEOPLE: “Often by designing activities for people with disabilities we create better activities for everyone” – Dr Kirsten Ellis

August 20, 2020August 23, 2020 by Mylan Vu, posted in People

As part of our National Science Week series, Dr Kirsten Ellis shares why she built TapeBlocks, where the idea came from, and why building products for people with disabilities benefits the whole of society.

What originally sparked the idea for TapeBlocks?

In the past, I have run an electronic textile workshop where people are able to sew a circuit which has been used to introduce a new group to circuit making. This is a different approach to circuit making than traditional breadboards and soldering wires but I found that a lot of people still had difficulties with the fine motor skills required to build circuits so I wanted to create an activity that anyone could do, no matter what their abilities were.

How does TapeBlocks work?

TapeBlocks are based on children foam blocks that are wrapped in conductive fabric tape with electronic components placed either on top or underneath. The conductive tape acts as the wire so to make a circuit you just have to push the blocks together. TapeBlocks include a power block that holds the battery carrier. This is connected to a Light Emitting Diode (LED) to create a light circuit. The blocks can also include vibration motors, buzzers, buttons and fans.

Why is it important for science and STEM engagement activities to be inclusive, particularly for people with disabilities?

People with disabilities should be included in STEM engagement activities as full members of the community.
Often by designing activities for people with disabilities we create better activities for everyone. TapeBlocks are a great for people who have a disability but they are also useful for children, the elderly and to build confidence for people who have previously had bad experiences with electronics.
Including people who have a disability in STEM activities also helps to change perceptions of what they can do if the activity is designed well

What are some actions STEM professionals can be taking to keep themselves accountable when it comes to inclusivity in their workforces and the products they are building?

When STEM professionals are making products, they are building them for everyone in the community, that includes people who have a disability who are also clients. It is important to make products that are accessible to all clients, not just some of them. Having an inclusive workforce is really important because when we are making products, how do we know what the wider community needs if they are not active participants in the entire creation process including discussions on the design and user testing at the end. Many errors in product development can be avoided by actively engaging a full range of people in the development process.

About the expert

Kirsten Ellis is enthusiastic about using technology to create a more inclusive society. She brings together technology and creativity to produce innovative solutions to real world problems. Her research interests include human computer interaction where she utilises her experience in designing, developing and evaluating systems for people to advance the field of inclusive technologies.

Kirsten has an eclectic list of qualifications with a PhD in Information technology in addition to graduate qualifications in arts and education and a bachelors in applied science.

Kirsten started her career in storyboarding and designing games prior to moving in to academia. She has built her research with 1.3 million is grants from the ARC, NGOs and philanthropic organisation researching how to build great resources to support people with disabilities. Her research includes: technology for teaching sign language using the Kinect to provide feedback to learners; attention training for children with intellectual disabilities; fatigue management for cancer survivors and collecting clinical data for bipolar diagnosis. In addition, she likes to play with eTextiles and call it research into innovative technologies. This play is used to develop tangible objects that can be used to create authentic learning experiences such as simulations.

Image description: Photo of Kirsten sitting at a table with a scattering of coloured TapeBlocks on it, holding a few TapeBlocks in her hand. She is smiling and looking slightly upwards, with short brown hair and is wearing a white collared shirt and black blazer.

ADVICE: Amplify people with disability, don’t speak for them. We all have biases.

June 29, 2020February 15, 2021 by Mylan Vu, posted in Views

Digital accessibility has long-been misunderstood and overlooked as a complex and costly exercise. But high-profile court cases like the 2015 case against Coles in 2015, which has led to significant changes and new initiatives to make online experiences more accessible, demonstrate that accessibility isn’t a ‘niche’ area and in fact impacts the lives and autonomy of millions of people.

Allison Ravenhall is a Digital Accessibility Consultant at Intopia. In this interview, she shares how she started her career in this space and why she is still passionate about digital accessibility today.

How did you kick off your career as a digital accessibility consultant?

I started my professional career as a web developer in 2000. Later, I moved into user experience (UX) and technical writing. Around 8 years ago the place I worked for placed me in a digital accessibility role, they figured it was a “UX specialisation”. There was a lot more to it than that! I used my UX and programming experience, learned on the job and enjoyed it so much I have been working in digital accessibility ever since. I’ve worked at digital accessibility consultancy Intopia since 2016.

My role now… I run audits against a technical standard, to check if people with disabilities can use certain websites or mobile apps. I assess if a site supports 5 characteristics that can impact interaction: vision, hearing, speech, cognition, and mobility. I use assistive technologies like speech interfaces and screen readers to check how well a site works. I run training for developers to teach them accessible coding techniques. I run usability sessions with people with disabilities to understand their most pressing access issues. There’s lots of variety.

What originally sparked your interest in this field and how has your interest in digital accessibility evolved over time?

My initial reaction to hearing about digital accessibility was, “Wow, this is a thing?” I didn’t even know it existed, which is sadly common. I have learned a lot about digital accessibility since then, not least that there’s always a lot more to learn! I love the technology aspect of it, how well-crafted tools can enhance a person’s life.

One thing I discuss in my training is how much accessibility can affect a person’s autonomy. A well-built, accessible banking app can enable someone to manage their own finances. A poor quality app may force people to ask for help. They may have to share their PIN, and the assistant can see their transactions, their balances. That person is in a vulnerable situation, all because an app isn’t accessible.

What are the most common misconceptions about digital accessibility that you come across?

“Digital accessibility is a niche thing, it only affects X% of people”. No it’s not, and no it doesn’t. A short term injury or illness is a disability, for a time. Our environment or situation can affect our ability to interact to our usual level. Everyone is different, we should acknowledge and enable as many different ways of working as we can.

Why is diversity in STEM fields important to you?

My privilege limits my contribution to digital accessibility. I cannot use, understand or appreciate assistive technologies like someone who relies on them 24/7. I cannot truly know another person’s lived experience. Where possible, I link my change requests to feedback from people with disabilities rather than “because the standard says so”. I seek to amplify people with disability, not speak for them. I believe in “nothing about us, without us”.

People with disabilities working in STEM is the most effective way to further digital accessibility. When team members can’t do basic tasks due to inaccessible tools, it creates awareness and urgency that doesn’t exist in an able-bodied team.

What are some examples of where you have personally experienced and seen a tangible impact of having diverse team members building a product?

I invite developers to observe usability sessions with people with disabilities. “I didn’t think they would use it that way” is the most common thing I hear after the sessions. We all have our biases. It’s hard to see beyond our own experience, our own way. Part of my role is to raise awareness of different ways of thinking and doing, so those developers know how and why to build more inclusive products.

About the expert

Allison Ravenhall has worked in enough IT roles to fill a bakery: tester, web dev, team lead, tech architect, usability and UX consultant, tech writer, training facilitator, speaker, and accessibility consultant.That depth and breadth of experience is all brought into play in Allison’s current role as Digital Accessibility Sensei at leading Australian accessibility consultancy Intopia, helping organisations create inclusive websites and apps.

Image description: Allison Ravenhall smiles, with fair skin, a solid build and long dark straight hair. She wears a black t-shirt with a white paint spatter print.

VIEW: Research cannot be a vehicle for reproducing disadvantage and oppression, as it has been in the past

June 2, 2020May 30, 2020 by Mylan Vu, posted in Views

Ableism – or discrimination against people with disabilities – has had detrimental impacts on immigration policies and immigrants, suicide rates among people with disabilities, and social acceptance and stigmatisation by society. Unfortunately, many have seen ableism have an accelerated impact during the coronavirus pandemic.

Research in this field, could help to instigate social change, policy reforms, and improved environments for people with disabilities. Alberto Vásquez Encalada is a Research Coordinator at the Office of the UN Special Rapporteur on the rights of persons with disabilities, who believes strongly in the positive impacts the right research can have. However, to be truly effective, the impacts of ableism need to be taken into consideration.

In this interview, Encalada shares his views on how research can make a difference, how research has failed to help in the past, and the importance of involving people with disabilities in research programs as researchers.

In your view, is there enough research being done into how to improve the lives of people with disabilities? Why or why not?

Research is a powerful tool and it has the potential to both preserve the status quo, as well as trigger social transformation. With respect to persons with disabilities, it is not a question of whether the quantity of research carried out is enough, but it’s a matter of the frameworks and methods used.

Persons with disabilities have been the objects of study and research throughout the centuries. Most research was focused on how to cure or “correct” impairments, which led to the medicalization of disability and the spread of ableist beliefs that the lives of persons with disabilities are of less value or less quality. Knowledge and research were conditioned by these norms and standards and continued to perpetuate the exclusion of people with disabilities in society. Disability was not understood as an identity nor a part of human diversity.

We need more research seeking out what are the lived experiences of persons with disabilities and what they would deem to be improvements to their own lives. To achieve this, research must involve persons with disabilities as active participants – as partners, as researchers themselves – in the design, implementation and evaluation of studies, to respond to their concerns as equal members of, and contributors to society. Research should be participatory and emancipatory, to empower individuals and groups, and, above all, must refrain from being a vehicle for reproducing disadvantage and oppression.

What is the role of research in the disability sector, and how has this changed in the last ten years?

The biggest game changer for persons with disabilities in the last years is the UN Convention on the Rights of Persons with Disabilities (CRPD). This treaty entered into force in 2008 and introduced into international law the human rights based approach to disability. It is unique in the fact that it was developed with unprecedented participation of civil society, in particular, people with disabilities. As such, the CRPD enshrines principles and rights which are relevant for research and should serve as guidance for research, such as respect for their inherent dignity and individual autonomy; respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; their full and effective participation and inclusion in society, among others.

The CRPD questions the idea that persons with disabilities are exclusive to the “disability sector”; they belong first and foremost to wider society, as everyone else. In this vein, it is not only disability-specific research which concerns persons with disabilities, but all research: research on poverty, climate change, urban planning, political participation, etc. Without ensuring inclusion of persons with disabilities and the collection of their experiences, as well as disaggregated data in research, they will continue to be invisible and left behind.

The CRPD has opened up a new era of rights based research and projects – research focusing on eliminating inequalities, eliminating segregating, oppressive and harmful practices such as institutionalisation, forced medical treatment, involuntary hospitalisation, and promoting community based support, supported decision-making, inclusive education, and political participation.

And this is having an impact.

For example, my organisation in Peru, SODIS (Sociedad y Discapacidad), together with the disability movement, took forward such research leading to a landmark legal reform on legal capacity which has been recognised and welcomed globally.

How are researchers currently collaborating internationally to ensure learnings and successes are shared?

While the CRPD ushered in the rights based approach to disability, it has yet to be embraced across all sectors, including in the field of research. Some research today continues to contradict basic human rights standards and continues to yield the voices and experiences of persons with disabilities to the “evidence” of “experts”.

And this is not an exclusive practice of the medical or health industry, it also involves human rights scholars and social scientists whose research and projects seek to justify discriminatory practices.

On the other hand, there are an increasing number of global agencies, governments, and human rights experts aligning with the standards of the CRPD as well as the Sustainable Development Goals, calling for more disaggregated data, investment and research into ensuring persons with disabilities are not left behind.

Disability rights research networks are growing across universities, along with partnerships with governments and the private sector to foster research and projects into innovation relating to assistive technology, participation, inclusive design and inclusive culture. Moreover, persons with disabilities and their representative organisations are increasingly visible and recognised as key partners across all agendas. And new networks are emerging, for example, the Latin American Network of Psychosocial Diversity (Redesfera Latinoamericana de la Diversidad Psicosocial – Locura Latina), of which I’m a member.

What improvements in disability research do you think should be prioritised and actioned in 2020?

The COVID-19 pandemic has been a wake up call to the disability community, demonstrating that people with disabilities are still among the furthest left behind. It has again exposed the inherent risks and wrongs of institutionalisation – not only for persons with disabilities but also for older persons. It is an inhuman way to live and to die, segregated and confined apart from the community, subject to greater risks of neglect and violence.

While the pandemic has been a tragedy in those respects, it also brings a new opportunity to challenge the practice of institutionalisation and to call for more data and research on how to accelerate the transition from institutional care to community support.

The long-term socio-economic effects of the pandemic have also highlighted the importance of having robust social protection systems. I would expect an increase in research on how to make social protection programmes more inclusive of persons with disabilities, so they can cover the extra cost of living with a disability, respond better to their disability-specific needs, and provide adequate incentives to enter and stay in the labour market.

About the expert

Alberto Vásquez Encalada works as Research Coordinator at the Office of the UN Special Rapporteur on the rights of persons with disabilities. He is a Peruvian lawyer and holds an LL.M in Disability Law and Policy from the National University of Ireland, Galway. He has served as a consultant to various UN agencies concerning disability and mental health-related issues, including ILO, OHCHR, UNICEF and WHO. In Peru, he was actively involved in the drafting, advocacy and monitoring of laws and policies relating to persons with disabilities, and worked at the Ombudsperson Office and the Peruvian Congress. He is also president of the NGO Society and Disability – SODIS and a founding member of the Latin American Network of Psychosocial Diversity.

Image description: Headshot of Alberto Vásquez, a Latino man with curly dark hair and beard, wearing glasses, a white shirt and black blazer. He is looking straight ahead and smiling, seated in the Human Rights Council Room of Palais des Nations in Geneva. Photo by Federica Settimi.

PEOPLE: “I wanted everyone to see that people with disabilities were beautiful too.” – Madeline Stuart

June 1, 2020June 1, 2020 by Mylan Vu, posted in People

Madeline Stuart is a game changer.

After deciding she wanted a career on the catwalk, her first photo shoot went viral, and she has never looked back. With the support of her mother, Rosanne Stuart, Madeline has embarked on an incredible career in the spotlight, and has used her very public platform to advocate for diversity and empower the disability community.

In this interview, Madeline shares her career journey so far, and how she sees the representation of people with disabilities evolving.

When you told your mum at the age of 17 that you wanted to be a model, what was going through your mind at that time?

I was at a fashion show. I had just seen the models on the catwalk for the first time. I was in awe of their beauty and confidence, they looked like they were having so much fun and everyone was watching them walk. I wanted to be up there, I wanted everyone to be looking at me like that. No one had ever looked at me like that, I don’t think anyone had ever seen me like that, except my mum of course. I wanted everyone to see that people with disabilities were beautiful too.

What stood out to you about a career in modelling?

I think it was just the catwalk, it has always been about the catwalk for me, I wanted to represent my community, I wanted to change the world and I thought to be up there walking was the first step.

Has your modelling career turned out as you had anticipated?

Oh my god, no way, I never dreamt I would ever have the opportunities I have had, I feel so blessed to have been able to travel the world, to be able to educate people on disabilities, to meet the most amazing people. I really will be eternally grateful to everyone who has supported me on my journey.

Have there been any surprises along the way?

Yes so many surprises, so many things to learn, so many things to be changed. I think the biggest surprise to me was the way different countries relate to disabilities and how people with disabilities are treated.

I always talk about my time in Uganda. We went there after a Pastor reached out to us for help. He had a young girl with Down Syndrome living in his village who was in danger. In Uganda there is not a word for disability – people do not understand what down syndrome is, they think people with disabilities are a curse, that they will bring bad luck to the villages so they kill them.

We went to Uganda to educate people that down syndrome was perfectly natural and nothing to be scared about. We travelled the country and 50 families brought their children out of hiding, children that had never seen the sunshine before. It was one of the most amazing experiences of my life. Uganda is just one country that we had the privilege to visit and every country is different.

With more people with disabilities appearing on catwalks, do you believe the modelling industry has truly become an open and inviting space for anyone and everyone?

I think the industry is heading in the right direction, I think we have come a very long way, you now see a lot of campaigns with people with disabilities, you also see a lot more models on the catwalk or in magazines with disabilities but I still believe it has a long way to go.

In your view, are people with disabilities ‘visible’ enough in society? Why or why not?

If you look at statistics, 1 in 5 people have a disability so 1 in 5 people we see on the catwalk, on tv or in magazines should also have a disability of some kind. We live in the real world at a time where people want to feel accepted and want to accept. I do honestly believe we are only at the start of our journey, of the journey to an inclusive world and with time the world will change and people will feel included.

What is the biggest challenge you’ve faced in your modelling career? How have you overcome it?

The biggest challenge that I have had to face in being recognised as a professional and financially compensated as one. Unfortunately a lot of people feel if they include people with a disability on the catwalk or in a campaign that is payment enough and also a lot of parents and carers do not expect the young person they are caring for or advocating for needs to be paid – they are so use to them being excluded, being invisible to society.

I was lucky. My manager never let me work for free, she educated people that like everyone else I needed to be paid, that I was valuable to their company and with time things have slowly changed and now people always expect to pay me.

What’s your advice to other aspiring models who may feel they don’t fit the stereotypical ‘look’ of a model?

Don’t give up, believe in yourself but also be realistic. It will be a lot of hard work and there will be a lot of rejection, also just because someone says no does not mean you are not good enough, it just means you are not what they are looking for this time.

Also remember that just because you have a disability does not mean you can do all sorts of work. One of the reasons I have been successful is because I am sample size so I can go to any catwalk and fit into the clothes, if you are a plus size model than go to casting calls for show that are for plus size models, if you are under 16 go to casting calls for kids or tweens and most importantly if you are over 18 only do shows for adults. I have so many designers that do childrenswear ask me to model as I look very young for my age but I never walk in a show for Children or tweens as I am an adult.

About the expert

Madeline’s modelling career began just over four years ago when she attended her first photo shoot and then posted the photos to a public figure Facebook page with the help of her mother Rosanne Stuart and they clearly spoke for themselves. Overnight the post went viral. Madeline’s social media numbers grew, the photo was viewed over 7.2 million times which resulted in her hitting global headlines with publications in Iceland, Germany, the US, Australia, Mexico, Cuba and the UK picking up her story. Within weeks Madeline was receiving offers to model and walk at the world’s most prestigious fashion events.

Since then, Madeline has walked in over 100 fashion shows across the globe, frequently walking on the official Fashion Circuit including; New York Fashion Week for the past 8 seasons, London Fashion Week, Paris Fashion Week, Mercedes Benz Fashion Week China, Astrakhan Fashion week Russia Runway Dubai and many more. She has built herself a credible platform to promote the brands she is working with. With over a million followers across her social media platforms, and a readership of over 50 billion. Madeline’s core audience is young women between 18-44, a demographic that she believes will benefit greatly from the achievements and inspiration she provides.

Website: http://www.madelinestuartmodel.com

Image description: Professional photo of a Caucasian woman sitting on a chair, looking at the camera. She has long, red, wavy hair and wears a red and white floral dress. The photo’s background is black.

PEOPLE: Why Sharon daVanport built a support network for autistic women and nonbinary people

May 26, 2020December 5, 2020 by Mylan Vu, posted in People

In 2010, Sharon daVanport founded the Autistic Women & Nonbinary Network (AWN) to build a supportive community where autistic women, girls, nonbinary people and people of all marginalised genders could share their experience in an understanding, diverse and inclusive environment.

In this interview, Sharon shares how gender stereotypes can lead to a misdiagnosis, how they are maintaining and building the AWN, and their views on disability justice.

How do gender stereotypes impact how autism is assessed among women and girls?

As with all stereotypes, spreading inaccurate beliefs means that any hint of possible truth is lost. After a while, people begin to accept reductive stereotypes as fact, and when this happens in the disability community, it is because of ableism.

Stereotypes about cisgender women vs. cisgender men, like the misogynistic and anti-trans “male brain theory” of autism, have saturated most autism research and diagnostic tools up until just a few years ago. For instance, autistic girls and women who come across as shy and introverted are less likely to be deemed deviant than autistic boys and men who are perceived the same way, since society expects women to be subordinate to men.

The toxic combination of ableist stereotypes along with misogynistic beliefs has led to not only both trans and cis autistic women and girls being misdiagnosed, but all other gender minorities as well.

Is there a way to remove gender stereotyping from this process?

All autism research needs to include autistic people of marginalized genders in meaningful ways. This must include leadership and decision-making roles, and real partnerships where autistic oversight as consultants and collaborators on these studies is the norm.

Equally importantly, nonautistic researchers must be sure to cultivate relationships and collaborations with autistic people who experience multiple forms of marginalization, including autistic people of color and autistic queer and trans people.

Fortunately, I’ve seen first-hand the tide turning in the right direction over the past couple of years with research. There are groundbreaking studies currently in full swing where autistic women, nonbinary people, and other people of minoritized genders are in leadership roles and fully informing autism research. Right now, AWN is partnering with researchers at several universities to address reproductive and sexual health, diagnostic disparities, all-inclusive funding for true grassroots efforts, and other cutting-edge issues in autism research.

As an autistic nonbinary femme mother of mixed native/white heritage, it’s even more exciting to me to know that researchers take voices like mine seriously, and that I am also in the room as a researcher and a colleague.

Since founding the Autistic Women and Nonbinary Network (AWN), what have been the biggest challenges you’ve experienced in maintaining and growing this network?

I love this question because it hits at the heart of why AWN has chosen to keep our growth proportionate to our core values. As a grassroots organization we learned very early on that there’s a trade off to growth and accepting funding opportunities that flies in the face of why we organized our autistic efforts in the first place.

For example, AWN has passed on several large scale grant and partnership funding opportunities that would have provided us with years of guaranteed income for full time salaries, goals, etc.; however, we would have had to compromise the values that we aspire to uphold, namely, putting autistic and disabled people of color and marginalized genders at the forefront of AWN initiatives.

Instead, we remain confident in our choice to remain true to our grassroots efforts and move our goals, vision and mission forward, at a careful and deliberate pace dedicated to serve with an access-centered vision that follows the lead of those who are most impacted by oppression and marginalization. For instance, we strive to compensate our people for their often underfunded and underpaid work, because we know from our own experience that burden of taking on free labor disproportionately falls on marginalized people.

This has often meant publishing fewer articles or anthologies, policy statements, or other public projects than many other better resourced organizations. We do so because although we do have volunteers, we strongly prefer to make sure we can offer something in recognition of the work done by our community members.

AWN’s answer to paying it forward has been the creation of our fiscal sponsorship program where we mentor, support and provide fiduciary oversight to oftentimes lesser known disability efforts and grassroots organizations who are seeking to change disability activism by addressing racial and gender justice, reproductive justice, disability prisoner justice, and voting access and rights for disabled people as core parts of their mission.

What role do you believe support networks like AWN play in enabling disability justice?

Wow, where do I even begin?

Disability justice can seem like such a complex concept because it requires an intersectional approach that includes many movements and communities. If you think about it, what looks like something essential to social justice work to me, might not even be on the radar of another person or organization. I believe this is where we can each find our strength!

But in reality, disability justice is very simple. It’s affirming that each of us has value outside of harmful expectations and assumptions, and that each person deserves access and support no matter who they are or what communities they come from. That also applies to how we each do advocacy, and what we already know about and focus on in our own work. It’s okay for each one of us as disabled people, as well as for disability organizations, to focus our efforts on the areas where we most closely align.

However, the role that organizations like AWN play often lies more with our willingness to support and celebrate each other’s success, as opposed to adopting the capitalist mindset of viewing one another as competition for scarce resources. Sadly, AWN has been on the receiving end of that kind of toxicity from other organizations and individuals before, but we have learned to keep moving forward and stay focused on the end goal – doing our part to contribute to the disability justice movement by giving all we have. We are always thrilled whenever we learn of other people or organizations who are doing the same, and happy to promote their work and develop opportunities for future partnerships.

About the expert

Sharon daVanport is Founder and Executive Director of the Autistic Women and Nonbinary Network (AWN). Sharon’s work encompasses several aspects of the wider disability justice movement, including steering committee member of the National Disability Leadership Alliance, represents AWN on the Consortium for Citizens with Disabilities, serves as treasurer for Crushing Colonialism, and is on the advisory board for Felicity House in NYC. Sharon is co-editor along with Emily Paige Ballou and Kristina Thomas of What Every Autistic Girl Wishes Her Parents Knew, self-published by AWN. They have spoken before the United Nations and the White House and received recognition from the Autistic Self Advocacy Network for their contribution to the self-advocacy movement, and the Autism Society of America for outstanding literary work of the year. Outside of Sharon’s work in autistic advocacy, they have nearly a decade of experience as a social worker, and they are a parent of four diversely neurodivergent adults.

[Photo description: A mixed Native and white person with large square glasses and long, flowing brown hair, looking directly at the camera and smiling widely and warmly. They are wearing a light pink collared shirt.]