There’s a particular kind of tiredness that comes from having to explain your existence over and over again. It’s not the tiredness of a long day or a late night. It’s the heaviness that settles in your chest when you realise—again—that the world still expects you to be the teacher, even in moments when you’re the one who needs support.

For many blind people, this happens in places where you’d hope it wouldn’t: hospitals, clinics, emergency departments. You arrive needing care, but before anyone even asks what’s wrong, you’re already fielding questions about how much you can see, whether you can read the forms, whether you “want a wheelchair,” or whether someone should “guide you by the arm like this.” You’re suddenly responsible for correcting unsafe guiding, explaining that blindness isn’t a spectrum of “a bit blurry,” and reminding trained professionals that disability doesn’t erase your autonomy.

It’s not that people are malicious. It’s that the baseline expectation is that you will educate them. Every time. Even when you’re in pain. Even when you’re frightened. Even when you’ve already delivered hundreds of disability responsiveness workshops to medical staff who should know better by now.

There’s a moment—quiet, internal—when you think: Why am I still having to say this? Why hasn’t this sunk in? And that moment hurts more than the awkward questions or the clumsy guiding. It’s the realisation that your lived experience, your expertise, your training, your voice… somehow still hasn’t shifted the system enough for you to simply be a patient instead of a teaching opportunity.

The frustration builds not because people are curious, but because the burden is always on you. You’re the one who has to correct the nurse who grabs your arm without asking. You’re the one who has to explain that “just follow me” is meaningless when you can’t see where they’re pointing. You’re the one who has to reassure them that blindness doesn’t make you fragile, helpless, or inspirational—it just makes you blind.

And underneath all of it is the quiet wish that, just once, you could walk into a medical setting and be treated as someone who belongs there without needing to justify or explain your body. That your presence wouldn’t trigger confusion or assumptions. That the training you’ve poured into the system would show up in the way people interact with you.

It’s not about wanting special treatment. It’s about wanting ordinary treatment—competent, respectful, informed. The kind of treatment sighted people take for granted.

The emotional labour of constantly educating others is invisible, but it accumulates. It’s the weight of every conversation where you’ve had to correct someone gently so they don’t feel embarrassed. It’s the mental calculation of whether you have the energy to explain something again, or whether you’ll just let it slide this time. It’s the knowledge that if you don’t speak up, the next blind person will face the same ignorance.

And that’s the hardest part: knowing that your silence might make someone else’s experience worse, so you keep teaching even when you’re exhausted. You keep advocating even when you shouldn’t have to. You keep explaining because the alternative is letting the system stay exactly as it is.

There’s strength in that, yes. But there’s also grief. Grief for the energy spent, the moments lost, the care you didn’t receive because you were too busy educating the people who were supposed to be helping you.

And yet, you keep going—not because you want to be an inspiration, but because you deserve a world where you don’t have to be one.

The phrase “everyone is having a hard time getting work” is often presented as reassurance. It is meant to soften the blow for disabled job seekers by suggesting their struggle is not personal. But from a disability advocacy perspective, that statement can also erase the very real, lifelong structural discrimination disabled people experience long before a recession, labour market downturn, or youth employment crisis arrives.

There is a profound difference between entering a difficult job market for the first time and spending an entire lifetime fighting simply to be allowed through the door.

For many disabled New Zealanders, the employment struggle does not begin at graduation. It begins in childhood. It begins in classrooms where support is inconsistent, where expectations are lowered, where students are underestimated or segregated. It continues into tertiary education, where disabled students often have to advocate constantly for accessible materials, assessments, transport, technology, or basic inclusion. Many become experts in resilience long before we ever submit a CV.

By the time a disabled person reaches the workforce, we are often already exhausted from years of proving we belong.

So if society even bothers to respond to our unemployment with “well, everyone is struggling,” it ignores the unequal starting points. It frames systemic discrimination as merely unfortunate timing.

That is not equality.

A nondisabled graduate facing a difficult labour market is encountering a barrier. A disabled graduate may be encountering layered barriers: inaccessible recruitment systems, employer prejudice, assumptions about productivity, transport limitations, benefit system disincentives, inadequate workplace accommodations, and the emotional toll of repeated rejection rooted not in capability but discomfort and bias.

The issue is not simply unemployment. It is unequal access to opportunity.

One of the cruellest realities disabled professionals face is the contradiction between qualifications and employability. Many disabled people are told throughout our education that success depends on gaining qualifications, working hard, and persevering. Yet after meeting every expectation placed upon us, we still encounter suspicion from employers. Gaps in employment become interpreted not as evidence of systemic exclusion, but as personal failure.

And those gaps matter disproportionately.

A nondisabled person with interruptions in employment may be viewed as someone who had bad luck, changed careers, travelled, or experienced economic hardship. A disabled person with identical gaps is often viewed through a deficit lens: unreliable, risky, fragile, expensive, or “too hard.” Employers may never say this openly, but disabled applicants experience its consequences repeatedly.

This creates a cycle of psychological harm. People begin internalising the message that no matter how qualified we become, we will still be seen as less employable than “normal people.” The repeated need to justify one’s existence in professional spaces becomes a form of social attrition.

And yet many disabled people have demonstrated extraordinary capability when actually given opportunities.

The irony is that disabled workers often develop skills employers claim to value: adaptability, problem-solving, persistence, creativity, empathy, and resilience under pressure. Many have navigated inaccessible systems their entire lives. We know how to innovate because survival has required it.

When disabled people do obtain good jobs, we frequently excel. But too often, employment continuity depends less on competence and more on whether a particular manager or organisation is genuinely inclusive. One visionary employer can transform someone’s career trajectory. A prejudiced employer can derail it overnight.

This inconsistency exposes an uncomfortable truth: the problem is not disabled people’s capacity to work. The problem is society’s inconsistent willingness to include us.

That is why it is deeply problematic to suggest disabled professionals should quietly step aside because the broader population is also struggling. Economic hardship does not cancel out discrimination. If anything, downturns often intensify it. When competition increases, marginalised groups are usually pushed further to the edges first.

History shows this repeatedly. Disabled workers are often among the last hired and first discarded.

Advocacy in this space therefore cannot merely focus on “helping disabled people become work ready.” Many already are work ready. Some are overqualified. The conversation must shift toward employer accountability, systemic accessibility, and confronting ableism in hiring practices.

This includes difficult but necessary questions:

• Why are disabled applicants still filtered out before interviews?

• Why are disclosure decisions still fraught with risk?

• Why are workplace accommodations often treated as burdens rather than ordinary aspects of inclusion?

• Why are employment gaps interpreted differently depending on whether someone is disabled?

• Why is disabled unemployment persistently higher even among well educated populations?

These are not individual failings. They are indicators of systemic inequity.

There is also a moral dimension to this discussion. A society that tells disabled people to study, work hard, and contribute, while simultaneously denying them equitable access to employment, creates a profound breach of trust. It asks disabled people to endlessly invest in systems that do not invest equally in them.

That betrayal accumulates over time.

It affects mental health, confidence, financial stability, housing security, relationships, and social participation. Unemployment for disabled people is not merely an economic issue. It is tied to dignity, belonging, and recognition of human worth.

And importantly, disabled people are not asking for charity. We are asking for fairness.

Fairness means recognising that “equal treatment” in an unequal system simply preserves inequality. It means understanding that diversity hiring is not about lowering standards, but correcting exclusionary assumptions about who competence looks like. It means valuing lived experience as part of professional expertise rather than viewing disability solely through a medical or deficit model.

Most of all, fairness means rejecting the idea that disabled people should patiently wait their turn until conditions improve for everyone else.

Because for many disabled New Zealanders, the waiting has already lasted a lifetime.

I recently attended a Disability Support Services (DSS) workshop on personalised budgets for disabled people. The discussion largely revolved around eligibility and assessment. I also completed the accompanying DSS survey, which raised further concerns.

As many of you know, last year the New Zealand Government drastically restricted the kinds of equipment and services disabled people could purchase to achieve a good life. The flexibility that once allowed individuals to meet their specific needs was sacrificed in favour of a narrow range of mostly neurologically focused supports.

For example, a blind person receiving respite care funding can no longer purchase Braille or audiobooks, but can buy noise-cancelling headphones, despite the obvious safety risks of using these while crossing busy streets.

When disabled people and our allies objected to these changes, the Government insisted that funding hadnt been cut, only restricted. But these restrictions are arbitrary and, in some cases, harmful. The shrinking list of eligible purchases has left many unable to use their allocated budgets. Disabled New Zealanders recognise that this situation has been deliberately engineered, likely as a pretext for further cuts in Thursdays budget.

Turning to the current consultation on personalised budgets (a high-level term encompassing multiple funding streams with varying eligibility criteria), several concerning issues stand out:

1. Lack of Genuine Disabled Leadership

Discussions about disability services must be authentically led and managed by disabled people. While some disabled individuals are involved, far more meaningful leadership is needed. Having worked in the Public Service, I understand the constraints of the system, but these consultations must be genuinely inclusive, not just performative.

2. Moves Toward Means Testing

The DSS survey in particular, strongly suggests the Government is considering means testing personalised budgets. This would penalise disabled people for striving toward financial independence and undermine the idea that support is an entitlement, not a favour.

3. Absence of a Rights-Based Approach

Instead of framing support as charity, the Government must follow international examples where personalised budgets are treated as entitlements, just like New Zealands National Superannuation. Such an approach affirms dignity and autonomy.

4. A Flawed Consultation Process

Although the survey allowed individuals to share views, the public meetings grouped disabled people, families, and organisations together. This structure risks drowning out the voices of disabled people, particularly when service providers and related organisations are focused on retaining their own government funding.

It appears that the Government may be manoeuvring disabled New Zealanders into accepting further restrictions, including means testing. But if we recognise this manipulation, we can push back. That pushback would be even more powerful with solidarity from other marginalised groups, who regularly ask for support from within the community.

We must exert political pressure, through the media and by contacting our local MPs, to demand the full rollout of Enabling Good Lives (EGL), which promises a fairer system grounded in choice and control. We’ve been waiting for this roll-out since 2011.

We understand that eligibility must be fairly established. This should be based initially on clear impairment criteria. Disability identity is important, but it is understood that funding is finite. EGL has already proven successful in the Manawat so why the delay in expanding it nationwide?

Finally, any government ministers who believe a return to institutional models of provision for disabled people would be more cost-effective than providing individualised support, are simply deluded. Not only would such a move risk another costly Royal Commission into abuse, but it also ignores the long-term social and financial costs of exclusion. Just look at the staggering expenses associated with the penal system.

Disabled people can and do contribute to our various communities, we have no wish to be treated as unproductive charity cases, pushed to the margins of society.

As many of you know, I have completed PhD level research which focused on leadership and management of the disability sector by disabled people ourselves.

Through my involvement in United Blind Leaders, I recently became aware of a blog highlighting not only disability leadership, but also interdependence, which is of far greater value than ‘so called’ independence.

The following blog is reproduced with the permission of the Author: Dr. Conchita Hernández Legorreta, Educational Consultant

https://www.conchitaconsulting.com/blog/navigating-together-empowering-blind-leaders-to-lead-the-way

"Navigating Together: Empowering Blind Leaders to Lead the Way"

Jan 28

Can the blind really lead the blind? One of my recent experiences confirmed that not only should we, but it is the only way!

I was asked by the Institute of International Education if I would serve as a support to a blind participant that was taking part in a program they were running. She would be pursuing a masters program at a university, which would be holding an orientation week in DC. Many organizations and government agencies run programs inviting international participants for cultural exchanges and experiences in the United States. While some programs are focused on individuals with disabilities, many are not, and people with disabilities should be able to participate in any and all programs.

The Institute of International Education explained that the blind participant was coming from abroad and it would be their first time in the United States. I don’t think they initially realized that I was also blind. I wrote to them that I would actually be a great fit because of my blindness. The point I made to them was that as a blind person living in DC, I could do a great job of showing another blind person how to navigate the city, share tips and pointers, as well as networks and resources. I was not sure if this was going to fly with them, as oftentimes organizations prefer “sighted professionals” who will keep the blind person “safe”. (I once interviewed virtually for a teaching job that told me I was the perfect fit. When I mentioned that I would be the perfect fit as I am blind, just like the students, I was immediately told that they do not hire blind people. Yes, it was against the law. And, yes, it still happens.)

To my excitement (and surprise), The Institute of International Education agreed that I would be great for this role and we moved forward with our DC day visit.

I met the participant, whom we will call Mia, at her hotel. She had planned where she wanted to go and what she wanted to do. However, she did not know the area at all or how to navigate it. The reality of blindness is that there is so much learning of blindness skills that is required to do basic things, such as navigating and finding new places, and it is difficult to come by such training. Likewise, many infrastructural and accessibility components may not exist in other countries, such as Accessible Pedestrian Signals (APS), whereas they do in the United States. You may have seen these around, they are the buttons that you press to cross the street and they make a sound for blind people.

One of the things we worked on was how to cross streets as we walked from her hotel to the metro station to get to all of our destinations. We talked about how the buttons work to cross the street, the different types of canes that exist, and how to cross using parallel traffic when no button is available. Our first stop was Target! There were several things that she needed in order to start her masters program. I asked her if she had ever asked for assistance in a store. She had not, she had always relied on others to do shopping for her. I explained to her that in the United States, you can go to the Customer Service section in a store and ask for a person working there to assist you in shopping. I told her I would be with her but would not speak at all. After some guidance from me on how to approach Customer Service and how it worked, she asked for assistance and learned to ask follow-up questions. In the beginning, Mia was not getting the exact item she wanted, but once we practiced how to ask more precise questions, she found exactly what worked for her. For Mia, it was a huge milestone to do this task for the first time ever and it will continue to serve her as she completes her program. We celebrated her achievement with a large lemonade!

We also talked about how to access books, what people she might want to connect with while in D.C., and what resources are available to her. We visited the White House, did touristy things, and shared with each other how we do things as blind people. By the end of the day, we were exhausted and decided to take a cab back to the hotel, as we had been using the metro all day!

This experience reaffirmed my belief that the best people to support blind people are other blind people. That is not to take away from sighted professionals who serve a purpose and can be amazing. But nothing will ever surpass the experience of seeing yourself reflected in someone else and to learn from each other. This reminds me of interdependence.

One of the tenets of Disability Justice is interdependence. The idea that we are not independent isolated beings, but rather, rely on each other to be a part of a community. People with disabilities have needs, as does everyone else, and we all give and take. For many blindness professionals, independence tends to be the main goal, and sometimes to the detriment of the individual. By being interdependent, we build community, trust, and strong social networks. What does interdependence look like in the real world? Interdependence in the real world looks like spending a day in D.C. hanging out, taking the metro, trying new things, and exchanging ideas!

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

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

Yesterday, the Board of BLVNZ announced the appointment of a new CE. Heres what disability activist and advocate Jonathan Mosen had to say about this:

Today, the Royal new Zealand Foundation of the Blinds Board has announced the next Chief Executive of Blind Low Vision NZ, who I congratulate and wish every success in the role. However, as someone with a personal and professional interest in the employment of disabled people, I am deeply disappointed that given all the blind, low vision and DeafBlind people with leadership experience both at home and abroad, yet another disability service provider has not seen fit to walk its own talk and appoint one of us.

For the remainder of this post, my references to blind people also encompass those who are low vision and DeafBlind.

When you are fortunate to reach a stage in your career where you occupy senior roles as I have, there is a tendency to play the game and not rock the boat. Not doing so leaves you at risk of gaining a reputation for being a troublemaker. But some issues are too important. After careful reflection, I realise that I would far rather be thought of by some as a troublemaker than have to live with myself as someone who has sold out and forgotten where they have come from. Until the day I die, I will still be a blind person and will still be affected by the quality of blindness services in New Zealand. I am a member of the incorporated society and have a right to express a view about decisions that affect me.

When the previous Government appointed a nondisabled person to set up our Ministry, I was one of the founders of Disability Leadership Now, which spoke out against the decision and I believe ensured that a disabled person would be appointed to the permanent role. There is a time to stay silent, and a time to speak out. For me, it is time for the latter.

I have been a champion all my life of the fundamental human right of disabled people to determine our own destiny. Any progress we have made has been hard-fought-for. That is why I was one of several people who spent many years consulting and drafting to come up with the current RNZFB governance model with self-determination at its heart, which was ground-breaking for its time.

Determining our own destiny also means directing the services we receive, and what those services are. Sadly, the principles of the RNZFBs Constitution have not been allowed to cascade to its operational arm. Blind people are now less involved in the organisations operation than at any time in its history. When I was a senior manager there in the 1990s, there were several capable blind leaders at the senior management table, most of whom were global leaders. Now, there is a grand total of 0.

Is that because there are suddenly no blind people capable of serving at senior leadership level, or might the organisation be an unattractive place for many such people to work?

Several blind people have felt compelled to leave the organisation for the good of their mental health and as a matter of integrity. The Board itself have acknowledge the hurt many blind people have experienced.

Particularly for those of us of working age, people who are aware of the services available to blind people in countries with which we like to compare ourselves know that there has been a serious erosion of quality here. Many skilled professionals have left feeling despondent. There is more of an occupational therapy focus in service delivery than a blindness focus. They are different disciplines. Assistive technology provision is under-resourced. In my opinion, one key reason for this is that no one around that Executive Leadership Table lives life as a blind person and does not completely understand what life is like for us. That is not to say they arent making a valuable contribution, but the voice of lived experience it essential around that table.

We hear a lot about the paternalism of the old Blind Institute and the control they had over the lives of blind people. Blind people had to organise and agitate in order to change that behaviour. But what is interesting is that only two blind people have led the organisation at an operational level, and both of them were appointed in the first half-century of the organisations existence.

The last blind person to hold the role then called Director was appointed in 1923. One would hope that a modern, progressive disability organisation that truly lived its constitutional values would be keen to break that 100 year drought.

While blindness cannot be the only qualification taken into account when considering who to appoint to the Blind Low Vision NZ CEO role, in my opinion it should be a highly sought attribute. Of course senior leadership experience is essential, but being a member of the blind community is significant because a CEOs role is fundamentally about overseeing the organisations culture, values, strategic focus and viability. External relationships are also a key responsibility of the CEO, so turning up as a blind person makes a bold statement. After all, if Blind Low Vision NZ will not appoint a capable blind person to their most senior role, why should anyone else?

It is vital to employ subject matter experts in finance, fundraising and other disciplines. The RNZFB has a complex asset base and it must be safeguarded for future generations. But a blind person should be directing those professionals, consistent with the RNZFBs constitutional objects which include principles of self-determination.

A blind person at the helm wouldnt be able to switch off blindness at the end of their work day, and they would know that they must live with the consequences of the decisions they make long after their term as CEO is over. I believe that there is a blind culture. It is forged out of common experiences of past institutionalisation for some. In the present it is forged from getting about in the world without sight, numerous accessibility barriers, frequently being underestimated and infantilised, knowing we have so much to give, but for various reasons being denied the opportunity to give it. A blind CEO would simply get all that.

It is time to start asking tough questions not just of the Board of this organisation, but of many others and of Government. Why is the disability sector in New Zealand different from most other minorities and those experiencing disadvantage. Most Mori service providers are, rightly, run by Mori. I have seen CEO roles for entities providing services to the LGBTQ community where being a member of that community was highly desirable. Most leaders of organisations providing services specifically to women are run by women. Yet we constantly see disabled people being passed over for leadership roles in our own sector, with few to no reprisals for the organisations concerned.

I hope that this issue is something the new Minister for Disability Issues will consider. Nothing talks in these increasingly corporate organisations like the bottom line. So when it is procuring services, I urge the Government to take into account which organisations are disability-led. Some points should be awarded for leadership at the governance level, more should be awarded for leadership at the operational level. The Government has the potential to help influence disability leadership through the many dollars it allocates.

Those of us who are members of the society should certainly keep this decision in mind when voting for directors. We put them there, they are accountable to us. This is the right we fought for all those years ago.

Meanwhile, the successful applicant had every right to apply for the role. Let us support her and play a constructive part in her education.

Jonathan Mosen MNZM

Check out Jonathans podcast, Living Blindfully, all about living your best life with blindness and low vision

https://LivingBlindfully.com

We are told the government supports the principles of Enabling Good Lives. But what does that mean in practice? This question was discussed during an online protest rally of disabled New Zealanders on Sunday 13 February. A spokesperson for the group, Disabled Leadership Now: Pam MacNeill, told the gathering that “while the government may say it supports the Kaupapa of Enabling Good Lives, this is just lip-service when it comes to leadership and staffing in the new ministry for disabled people. What happened to the principles of a person centred approach to building relationships with us, backing our right to self-determination to achieve ordinary life outcomes, and enhancing our mana by placing us in the mainstream of Public Service work about disablement? In appointing a nondisabled person to the role of Establishment Director for the ministry, the opportunity has been lost to enable disabled people to define our own agenda, and begin early to ensure easy access to our ministry by disabled Kiwis.”

Mrs MacNeill further called for vigilance on the part of those present lest the Public Service Commission appoint a substitute disabled person to the role of Chief Executive once the establishment phase of the ministry is completed in July this year. “We can not accept family as substitutes for disabled people staffing the ministry. Neither will we be mollified by appointments of people who may claim disabled status but with no personal lived experience of disability” Pam MacNeill said today.