Paula Jessop is an autistic woman and autistic rights advocate. She lives in Tauranga with her cat.
Paula has been involved with autism self-advocacy for many years in New Zealand. She was an integral part of guiding Altogether Autism to become a more inclusive organisation as their first Autistic advisor. She has played a role in shifting the language in the autism sector, along with promoting the importance of knowledge gained from lived experience.
In systemic advocacy Paula tends to be the ‘disrupter’ who shakes up the status quo and at times she has acted as a ‘weaver’, connecting and supporting other autistic people embarking on self advocacy, in the belief that empowering others in our communities to have a ‘voice’, benefits us all. Paula continues to shift between social change roles and has an attitude that it’s worth trying anything, big or small, to see if it creates change.

Mark Cook
Hello, my name is Mark I am 38-years old, I live in Bramhall, which is a suburb of Stockport in Greater Manchester. I live with my parents, Ann and Keith and I have an older brother called Peter who is a teacher in London.
I went to mainstream school in Bramhall and then I went to college. After college I had a job with a training company as an administration assistant. I was there for eleven years until 2020 when I was made redundant due to the pandemic. I now have another job at a recruitment company in Manchester and I work there one day a week. I have been there for nearly a year and I am really enjoying it.
On two other days I go to an animation workshop where I can create short cartoon style films and to a radio station where we research topics and discuss them. The recordings are then posted on the internet. Both of these activities are with an organisation called Pure Innovations.
My hobbies are films, reading and listening to music and I love eating out.
I have Down’s Syndrome and I am deaf in my right ear, but those things do not get in the way of me doing anything.
During lockdown I began writing a film blog and I have carried on since then! The link to the blog is given below in case you are interested.
https://mdcreviews.blog/

Podcast Chapters
[00:00] Introduction – Disability Disrupters Podcast
[00:20] Introduction to Podcast Guests – Paula and Mark
[00:57] Advert – Disability Responsiveness New Zealand (DRNZ)
[01:21] Interview with Paula Jessop
[31:00] Dr Pam discussing goals
[34:14] Podcast seeking contributions from Listeners
[34:45] Dr Pam introduces Mark Cook
[35:09] Interview with Mark Cook
[46:27] Podcast Donations request – Tipjar
[47:29] Goodbye from Dr Pam

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Episode Notes

Dr Peter Wheeler worked in the UK nuclear engineering field until loosing his sight at the age of 38. After going blind he went to university and gained a first class honours degree in business and management. He then went on to undertake a Ph.D. at Warwick university. Peter then undertook research projects at both Warwick and Salford universities before finally taking a full time role as senior lecturer at Edge Hill university.

“When first approached to be interviewed for the disability disrupters podcast, my initial instinct was to decline the offer. The reason is that I do not engage in social media which appears particularly toxic and a generally unpleasant environment to be involved with. I held similar views on podcasts not really believing most served any useful purpose other than to provide a boost to the ego of people who really don’t need or deserve their ego’s to be enhanced. However, on reflection I decided to rethink my beliefs. This is because I began to relive the feelings and emotions I went through when I first became blind, and the hopelessness coupled with feelings of uselessness which accompanied my loss of sight. The future appeared bleak with little hope of ever working again. At that time, I did not know of any other blind people or how anybody else had managed the transition between being sighted and blind. Having another person’s description of how they managed to live with and overcome many of the fears and anxieties which accompany sudden loss of sight would have been a significant help in understanding my own situation. Hence, I have agreed to join the disability disrupters podcast in the simple hope that if only one person listens to the episode and it provides them with even a thought of the slightest prospect for a brighter future, then participation would have been worthwhile."
Dr Peter Wheeler

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Disability Responsiveness New Zealand offers personalised mentoring and workshops, view the content of these at https://drnz.co.nz/about-our-workshops-and-programmes/

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Episode Notes for the Interview with Liel Bridgford

I am a Psychologist, writer, educator, and podcaster based in Naarm and who uses she/they pronouns. I am a proud disabled, immigrant, gender fluid femme, and my work is centered on inclusive, accessible and holistic support and education. I have been recognised as an ABC TOP 5 Arts resident, served as the 2022 Editor of Writing Place Magazine, and was a 2023 Melbourne Access and Inclusion Award finalist. I have facilitated presentations and workshops across Australia and internationally, and was published and featured widely.
In the past year, I founded Kultivate to advance wellbeing, equity, inclusion, and disability justice. Kultivate provides a space where disabled individuals can access mental health support and education delivered by professionals with lived experiences. By educating professionals, Kultivate improves the lives of disabled people globally. Kultivate’s mission is rooted in equity, community, mindfulness, and empowerment. My vision through Kultivate is to create an equitable and inclusive society where all disabled and multiply marginalised people thrive.
In the little free time I get, I enjoy singing along to the Frozen soundtrack with my kids and try to keep up with social media at @LielKBridgford.

Find the podcast here: https://www.kultivate.au/podcast or any major podcast platforms.

To connect with me, find me on Instagram: https://www.instagram.com/lielkbridgford/

Find my writing, interviews and more here: https://linktr.ee/lielkbridgford

Podcast music credit: Audio Shorts, music provided by http://www.andrelouis.com

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Episode Notes

Barry De Geest is a dedicated advocate and activist within the New Zealand disability community. He has worked throughout his life to further the aims of disabled citizens to achieve self-determination, choice and control. Barry is an active supporter of the Enabling Good Lives Approach.
Barry’s commitment to the sector is evident through his numerous initiatives, particularly through his establishment of the Renaissance Group, which aims to promote accessibility and inclusivity. His insights and dedication have not only raised awareness of the barriers faced by disabled New Zealanders in areas such as housing and employment, but has also assisted to foster a more inclusive society where all people can thrive.
Barry’s work extends beyond organisational involvement. He has been a vocal advocate in public forums, using his platform to educate and motivate others. His passion and persistence have garnered respect from many in the disability sector, making him a pivotal figure in the New Zealand disability rights movement. His efforts serve as a testament to the power of advocacy, and the importance of disabled leadership.

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While I was suspicious of payWave to begin with, since when these were introduced one had no choice but to have the chips included on payment cards, I now recognise that this is the best method for blind and vision impaired people to pay for purchases. This is because it is the only way we can preserve our independence and critically, our privacy, since we have no way of knowing if someone is looking over our shoulders while we enter our pins.

Tactile card readers with physical buttons are increasingly being replaced with flat screen readers. This means blind and vision impaired people have no way of working out where specific numbers are on the screen. Since the banks and others including police continually remind us not to give our pin number out to others, even trusted friends, what choice will we have if we can’t use the card reader independently or have to pay a percentage of the purchase price in ridiculous and greedy additional charges.

Additionally, the trend of including a question on card readers about including a tip is wrong. Again, if blind or vision impaired people wish not to pay this, they will have to tell the café or restaurant owner they do not wish to tip, which may be difficult for the less assertive among us, particularly if we then have to ask for their help to use the inaccessible card reader.

While I and others are prepared to use cash to avoid this greedy, rapacious price gouging, many businesses will not accept cash, even though this remains legal tender. Furthermore, government is increasingly pushing to have cash removed as a payment option in-store. Whereas, if we truly live in a democracy, we should have the choice about what payment method we use ourselves.

Put simply I do not believe any charges should be added for the use of PayWave, neither do I believe we should be allowing tipping to sneak into our commercial sector. All this leads to is people being underpaid and expected to make up their salary with tips.

Throughout my five years PhD research on the topic of barriers and enablers to employment for disabled people within the disability sector, I have been constantly struck by the paucity of sector leaders world-wide. This issue continues to be front of mind for me, and is a major reason for my starting the Disability Disrupters podcast, published on the 1st of each month. The recent discussion about vision Australia’s failure to run an open recruitment process for its new Chief Executive Officer (CEO) reminds me that, we’re not there yet.

Here’s the text of an open letter to Vision Australia Directors, from Blind Citizens Australia:

“26 August 2024

To Vision Australia directors,

We, the undersigned blind and vision-impaired individuals and our supporters, express our dismay regarding the decision to appoint a new Chief Executive Officer (CEO) through an internal Expression of Interest (EOI) process. As Australia’s largest provider of blindness services, Vision Australia has a responsibility to ensure its leadership reflects the lived experience of our community. We urge the Board to reconsider this approach and commit to an external search, prioritizing the appointment of the organization’s first blind CEO.

The final report of Australia’s Disability Royal Commission underscores the need for inclusive and representative leadership in organizations serving people with disability. It states, “Leadership should reflect the diversity of the community it serves, including the lived experiences of people with disabilities.” The report emphasizes that effective advocacy and leadership require that people with disabilities lead, ensuring their voices shape policy and service delivery.

While we acknowledge the talent within Vision Australia and its commitment to employing blind and vision-impaired staff, most work in client-facing and middle management roles, lacking the executive experience required for the CEO position. By opting for an internal EOI process, Vision Australia risks missing the opportunity to appoint an experienced, progressive leader with fresh perspectives capable of advancing the organization.

A blind CEO would not only bring invaluable lived experience but also serve as a powerful symbol of empowerment for the community. Such a leader would be uniquely positioned to address client needs, implement necessary changes, and drive the organization’s mission forward with genuine insight and authority.

Unemployment remains a significant barrier for blind and vision-impaired individuals. A 2019 World Blind Union survey found only 24% of blind Australians were in full-time employment, lagging behind countries like New Zealand and Canada. Additionally, pathways to executive leadership for blind and vision-impaired talent are limited. Appointing a blind CEO would demonstrate Vision Australia’s commitment to providing an open, inclusive process and addressing these disparities.

We appreciate the board’s intent to maintain momentum and ensure continuity. However, an external search is essential for transparency and inclusivity, especially given it has been 11.5 years since the role was last advertised. An internal EOI process may not fully capture the diverse perspectives required for effective leadership. The Disability Royal Commission called for “transparent and merit-based processes that value the perspectives of people with disabilities,” aligning with an external recruitment approach.

We respectfully urge the Vision Australia Board to revoke its decision for an internal EOI process and undertake an external search, committing to appoint a blind or vision-impaired leader as CEO. This will demonstrate the Board’s dedication to promoting the employment of blind people and meeting current expectations for disability leadership.

We hope our concerns will be considered, and we look forward to a process that reflects the principle of “nothing about us without us” and the high standards Vision Australia strives to uphold.”

I strongly urge disabled people, and our allies, to sign this petition started by Graeme Innes, supporting this open Letter:

https://www.change.org/p/open-letter-to-the-directors-of-vision-australia-urging-open-ceo-recruitment-process?signed=true

Amos Miller, the Founder and CEO of Glidance, is a trailblazer in the field of assistive technology. After losing his sight in his 20s due to a genetic eye condition, Amos embarked on a mission to revolutionize mobility for the blind and vision impaired. With over 25 years of experience, most notably at Microsoft Research, Amos has been at the forefront of developing ground-breaking assistive products using augmented reality and robotics. He is the founder of Microsoft Soundscape, an innovative audio augmented reality navigation app that has empowered countless individuals with sight loss. Amos’s dedication to accessibility and innovation drives Glidance’s mission to provide safe, independent navigation solutions, paving the way for a more inclusive future.

Amos says: “We are building Glide out in the open with the community and encourage anyone who is interested to engage with us to register on our website http://glidance.io. We hold regular virtual demos for new gliders where you can meet the team, learn about the product and our plans, and get your questions answered live by our team. You can write to us with your questions and thoughts, and in addition we hold a monthly zoom call on the last Wednesday of every month where we have more advanced in-depth conversations.”

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Disability issues have for many years been marginalised within the mainstream media, and the majority of nondisabled people control a narrative which is often wildly inaccurate. The media strongly influences public perception, reinforcing unhelpful stereotypes, negatively impacting the lives of disabled New Zealanders, including their access to employment opportunities. Representations about disabled people within both the mainstream and social media tend to be unimaginative, for example presenting all blind people as possessing superhuman hearing, objectifying disabled people as inspirational heroes for living ordinary lives, or completely excluding the lived realities of disability.

Journalists wield tremendous power and influence. Representatives from all forms of media are in a privileged position in the symbolic struggle to ensure information is seen, heard, and believed. The exclusion of disabled people from articles and stories about unemployment, together with the portrayal of us as interesting only when our stories inspire others, amounts to symbolic violence, which is difficult to detect and even invisible to its victims.

On Monday 6 May 2024, RNZ National’s Nine to Noon programme featured an item entitled “Youth Baring the brunt of rising unemployment”. The item discussed recently released stats on youth not in employment, education or training (NEET), which stands at 12.4%. It seems quite extraordinary that disabled people were once again completely left out of the discussion.

The silencing of the life experiences, hopes, and dreams of disabled people in the broadcast media was a catalyst for my recently completed PhD thesis entitled, Disability Work Matters: Employment Opportunities for Disabled People in the New Zealand Disability Sector. On Sunday 4 March 2018, RNZ National had aired an Insight documentary subtitled ‘No Job, No Training, No Hope?’ The website introduction to the documentary noted:

The economy is going gangbusters and we’re in the middle of a construction boom, yet 80,000 young New Zealanders are not in work or training while immigrants are brought in to work as builders and bricklayers. How does a young person end up unemployed and uneducated, and are there processes in place to help those people get back on the ladder?

While the programme advised that the unemployment rate in New Zealand stood at 4.5% at that time, those not in employment, education or training (NEET) made up 11.5%, as at February 2017. Māori and Pacific peoples, aggregated, represented 40% of NEETs, and 15% or 12,000 people were described as young women caregivers. It was reported that each NEET was costing the country just over $21,000 annually in benefits and lost productivity. This equated to $1.5 billion each year.

Since the previous census had reported that almost 70% of working-age disabled people were not in employment or undertaking education or training, it might have been expected that disabled youth would have featured strongly in this programme. However, this was not the case. The absence of information about disabled youth was particularly noticeable in light of benefit payments and lost tax revenue that accounted for $1.1 billion in 2016, as reported in a cost benefit analysis published by Workbridge that same year. However, the only mention of disabled people at all was in the passive role of those being cared for by young women “looking after an elderly or disabled relative”.

The media holds the power to highlight and support the interests of various community groups in New Zealand. When the disability-related programme One in Five was dropped by RNZ National some years ago, we were assured that disability issues would be included as part of mainstream news and current affairs coverage. This has not happened. Our lives and aspirations are either completely ignored by RNZ and other media outlets, or else they use the power associated with their status to misrepresent people who may hold little or no power themselves. It is way past time that more positive attention is given by the media to the one in four New Zealand citizens who experience disability, particularly with respect to our need for employment. Rather than constantly perpetuating stigmatisation through stereotypical portrayals, the media could instead use its privileged position and influence to educate, represent, advocate, and promote responsiveness towards disabled people’s access to all aspects of life, including employment.

DRNZ will shortly launch Disability Disrupters, a podcast featuring interviews with disabled people who disrupt society’s perception of us through living full and productive lives, and undertaking unexpected activities and careers. We will also feature e-mails from disabled people on the show. So if you think you’d like to contribute your experiences, write to disrupters@drnz.co.nz and don’t forget to visit http://www.drnz.co.nz to find out what we offer.

Disability Responsiveness New Zealand Ltd,nothing in our name, without our direction!

Pam MacNeill, Managing Director

The appointment yesterday of a nondisabled Chief Executive to Blind and Low vision New Zealand, echo’s common discourses and beliefs within society, often fuelled by both the traditional and social media, which label disabled people as unworthy and necessarily incompetent.

Unfortunately it is not surprising that a blind, or otherwise disabled person didn’t get the Chief Executive position. This decision follows a sadly predictable pattern. Seeking to keep up with the times, most disability-related charities today have changed their names in an effort to counter charges of paternalism. For example, the predecessor to BLVNZ was the RNZ Foundation ‘of’ the Blind, whereas its predecessor was the RNZ Foundation ‘for’ the Blind. Nevertheless, what appears not to have changed is the governance and control of such institutions.

An effective merry-go-round exists at the senior levels within the disability sector here and in other western countries, which sees senior executives leave one charity and remarkably join another, at increasingly senior levels. Someone with no lived experience of disability, working at a senior level in the disability sector, may have accumulated the social networks which simplifies their entry to a sector which exists to serve disabled people. This eventually leads to their gaining sufficient power to control that sector. Thus, circumstances surrounding such appointments are all about power and control, and ultimately how these are achieved in the name of disabled people, but not by people who actually live disabled lives; the people in whose name the sector exists.

Jonathan Mosen is quite correct when he notes that there are a number of highly qualified people in New Zealand, who not only possess the academic and business experience required to fill roles such as that of BLVNZ Chief Executive and other senior roles in other areas of the disability sector, but critically possess the key cultural capital conferred by their lived experience of disability. Disabled New Zealanders are increasingly seeking our rightful place in charge of our own sector, and just like members of other marginalised groups, we will keep demanding that we gain power and control over our own sector.

Pam MacNeill

Managing Director

Disability Responsiveness New Zealand Ltd

M Phil, Dip Rehab, Dip Soc Wk, CQSW, Dip Bus, PhD student