Establishing a new Ministry for Disabled People without disabled people leading it is simply history repeating itself, writes Robyn Hunt.

Disabled people who attended a recent online protest rally voted no confidence in the process of establishing a Ministry for Disabled People if it is not led by a disabled person. However disabled people, at the rally and beyond, emphasise that their opposition to this appointment is not personal to the individual appointed.

The Disabled Leadership Now rally attendees say the government is not listening to rank and file disabled people, and does not understand the depth of feeling of exclusion from the process. They objected to a communications vacuum from the establishment unit. 

Last October the establishment of a disability ministry was announced and disabled people were cautiously optimistic. This is not a new idea; the disability community has long sought a separate ministry. But the initial optimism was followed by disappointment and anger when, just before Christmas, the establishment process and the director appointment were quietly announced. A person who did not identify as disabled or bring strong connections to the disability community was appointed. 

It could be argued that this is only the establishment phase, but disabled people are concerned that during this time, systems and processes will be established without the application of an authentic “lived experience” disability lens, perpetuating old ways of thinking, being and doing, 

This lack of trust does not bode well for the future of a ministry that will combine functions and services from MSD and the Ministry of Health, many of which have a profound impact on the lives of deaf and disabled people. A new generation are not prepared to wait any longer for a change of outdated attitudes and approaches still informing disability policy setting, implementation and behaviour.

Old wounds have been reopened. There is anger and frustration as history repeats. Unlike other disadvantaged groups in the community, disabled people have rarely been in charge of their own destinies when it comes to the allocation of government resources and decision-making powers affecting almost every aspect of their daily lives. For example, the office for disability issues, established in 2002 as a result of the first Disability Strategy, has had two non-disabled directors, despite applications by qualified disabled people. An initial advisory group soon failed, and the suggestion of a governance group was rejected outright. 

Yet an advisory group is again proposed as part of the establishment of this desperately important ministry, a sop to the lack of disabled leadership. Advisory groups frequently lack influence, are powerless, poorly selected (often by non-disabled people), inadequately resourced, supported and remunerated, and have no accountability to their communities. A governance group could face the same problems, and may be seen as antithetical to core public service structures and operations and machinery of government.

With disability unemployment consistently double that of the general population, and poorer education outcomes, it could be argued that disabled people are simply not up to the job. However, while disabled adults generally have lower-level school qualifications than non-disabled people, that does not mean there are no well-educated, well-qualified, experienced disabled people. 

Recent history helps understand why this is such a big deal for the disability community. Disabled people have faced generations of discrimination, often embedded in legislation. For example, senior public servants could be dismissed on the grounds of disability until the introduction of legislative amendments following the inclusion of disability in the Human Rights Act 1993. Discrimination was rife and blatant before this. As the public service modernised with the introduction of new technologies in the late 1980s, a group of blind switchboard operators – mostly women – were made redundant with no support or retraining. Some never worked again. Constant restructuring of public entities saw disabled people dismissed simply because they were disabled. 

While the 1988 State Sector Act included equal employment opportunity provisions for particular groups of people, including disabled, embedded attitudes and public sector changes meant limited progress for disabled people.  The work of the EEO (Equal Employment Opportunities) Unit made a difference. It was permanent for some but sadly not for many disabled people. The core public service has avoided scrutiny on disability employment. It does not maintain information on numbers of disabled people employed, unlike other groups, but disability does not have influential critical mass commensurate with being 24% of the general population. Unlike women, for example, who are more visible and accepted in senior roles. 

Updated in 2020, the Public Service Act contains more general provisions for “diversity”, a concept that frequently excludes or marginalises disability in practice. There is no progress measurement.

Disabled people have consistently had difficulties in maintaining and developing their careers as public servants because of a lack of workplace accommodations, even at senior levels. Others rely on the generosity of colleagues for support, such as access to some information.  

A clear example of the lack of flexibility is working from home, not previously allowed for disabled public servants. Now, it is commonplace in a pandemic. Disabled people felt they were not trusted enough for something that is so easily managed.  

Disabled public servants can be isolated with little or no contact with disabled colleagues. Career progress has not generally been fostered. Management quality varies. Some leave to develop their careers elsewhere.

Disability is complex and nuanced, and the disability community is very diverse and intersects with other communities and identities. Some disabled public servants don’t see themselves as part of the wider disability community, seeing no advantages in identifying with the “other”. Some can and do hide their impairments, experiencing considerable stress to pass as non-disabled because it is easier from a career, if not a personal, perspective. They may fear consequences if they disclose, or feel no need to if there is no impact on their work. But managing change and complexity is a critical element of public service. Disabled people manage them in their daily lives, contributing a valuable skill.

Disabled individuals are recruited to government policy working groups, to represent a disability perspective alongside officials, high-profile external consultants, and disability service providers. Adequate access is inconsistent. They often feel their perspective is undervalued, that their influence is limited, co-opted as a cheap, relatively risk-free token appointment. It is difficult to establish a serious career or livelihood on such a basis.

Progress is still individualised, one disabled person at a time. Despite lip service to the social model of disability, as explained in the first disability strategy and the CRPD (UN Disability Rights Convention) there is little evidence of a systemic understanding of it in policy implementation and practice. Charity and medical paradigms are still very current. Change should go deeper than superficial disability awareness.

Establishing a successful disability ministry means quality engagement and communication with Deaf and disabled people, and intentional employment and development of disabled employees’ careers. Disabled applicants to direct the building of the ministry were shortlisted but not chosen.