06 December 2023

The role of families in sustaining a good life

This November, for the culmination of our 40th Anniversary parties around the regions, Parent to Parent staff, founders, life members, leaders, community partners, and all four Chief Executives from the past 40 years gathered in Auckland, where Parent to Parent NZ began. Lorna Sullivan, a life member who was involved from the very beginning, gave the following speech on the enduring value of supporting families to hold a powerful vision for the lives of their children.

“After 40 years, it is more than timely to take this time to reflect on the critical role of families and the need for family-led organisations such as Parent to Parent to continue to sustain families as they strive not only to survive (although that is a common enough experience) but to thrive.

“While there is no doubt that much has been gained in the past 40 years, sadly, much remains the same. Families continue to confront few options and limited vision from those services designed to support the lives of disabled people, and the need for a network of families sustaining families in both the practical sense and in holding onto a vision of a positive future remains as critical today as it was 40 years ago.

“We know that if we are going to see an authentic change in life opportunities for people with disabilities, clarity around what is both desirable and achievable is a prerequisite. From the outset, it is important to acknowledge that such clarity must sit with families, and it will be beholden on families to sustain each other in relentlessly pursuing full, meaningful and inclusive life opportunities for their family members.

“It was 45 years ago when I first found myself confronting these issues around what constitutes a good life and why society appeared to believe that a good life was the domain of the privileged—that for people with disabilities, life in the managed space rather than shared space was as good as we could hope for. That was a time when young people with intellectual disability were still being sent into institutions as little children, where access to education and commonality was not considered feasible, where outside of an institution, the living options available were large hostels or life at home in perpetuity.

“How fortunate we are that there were families who were not prepared to believe that this was as good as it gets, and that there were professionals who not only dared to imagine better for the lives of disabled people but actively brought families together to establish Parent to Parent as a peer leadership organisation.

“It is doubtful, however, that I will be privileged to witness the extent of change that will take place over the next 40 years. That will be your time, the time of families of children still to be born and those young families who are only now beginning on this journey. That is the legacy that you, as Parent to Parent—if you continue to be relentless in your advocacy for greater authority and autonomy over the assumptions held about your children and the supports available to them—are laying down. What I do believe, however, is that if you have the same courage and determination as those who have gone before you to continue to imagine better, today’s young people will continue to outstrip what could ever have been imagined.

“We live at a time when there is much emphasis on seeing people with a disability as being people just like everyone else. This is a most welcome development, as people with a disability have suffered greatly in not being seen as fully human and not being treated as unique and interesting individuals in their own right.

“While this might appear as a challenge to families—who might see the family voice being diminished in favour of the disabled person’s voice—remember that this should not be surprising, as the voices of disabled people have been oppressed for so long, they have a burning need to feel heard. However, remember that not only will this pass, but also that where there is a strong disabled person, there is a family who held a strong vision and invested heavily in bringing that vision about. Indeed, we have already come so far because there have been people, primarily families, who have refused to accept reality as it is or as it is presented to us.

“Remember also that even as families, who have the deepest commitment to our disabled children, we often foreclose too early on the possibilities and life potential, and when this happens, people with disabilities have minimal choice but to settle for, or rather conform with, our own limited expectations.

“It is almost always true that people, including families, will tend to underestimate, rather than overestimate, what could be possible in life for disabled people.

“A key factor is the extent to which most of us are limited by what we have not yet seen or experienced. Our beliefs about what is practical and reasonable tend to be what we already know and are familiar with rather than untried or unfamiliar options. So, what we consider “realistic” is most often more of what we already have, more of what has already happened rather than what has not yet happened or may yet be possible (M.J. Kendrick). In many cases, we may be deeply sceptical of what is new simply because the old is so comfortable, even if it is not all that satisfying.

“The lives of people living with disabilities are often not lived to their potential, not because of any personal limitations that the individual may have but because those of us responsible for the promotion and development of what might be possible in their lives, including families, are ourselves beset with fears, with anxieties and with stereotypes and have limited vision of the potential disabled people have for a full and purposeful life. It is only when we come to realise that more is possible and the life opportunities being offered to disabled people are not good enough that we are compelled to imagine better and to move towards what is possible.

“This requires a vision or picture of what is possible in life. We must place our focus on the competencies and abilities that people have rather than placing our emphasis on the struggles and challenges.

“However, the opposite, of course, can also be true. If we are not clear or do not struggle to become clear about what could be possible, if we hold no vision or a weak vision, then it is very easy for us to be driven this way and that depending on what is happening at the time, who is advising us and our energy for engaging in the challenges.

“A key role that Parent to Parent has held and continues to hold is supporting and sustaining families to hold onto that vision. Holding a vision is not a trivial act; it is the most powerful tool you possess to change lives. Vision is vital in keeping hope alive, and we must never let hope for what could be better die. Indeed, hope is more important and powerful than money.

“Whenever, as individuals and as an organisation, we hold a powerful vision for a better life, we embrace hope, and we look beyond the moment to the promise of what life might yet offer. Then, we begin to embrace true realism, a realism that is life-enhancing rather than life-denying.

“To conclude, so much of what is important in life requires vision, values and faith. It often requires that we believe in something before it comes true. If we don’t have faith, then we won’t do any of the great things that need to be done because we do not believe; we will not put ourselves out there; we won’t take a risk. We must be sincerely convinced within ourselves, or we will always defer committed action, and when it is the hopes and dreams of life that become deferred or ignored, then life itself and its potential will fade, and it is the hopes and dreams of families that lie at the heart of the work of Parent to Parent.”

Lorna Sullivan Bio

Lorna became involved in advocating for disabled people by accident. She began her study in the field of Psychology, where she was first exposed to people with disabilities who had been assigned to a life lived in institutions. 

It made no sense to Lorna that a group of people, through no fault of their own, could be marginalized from the rest of society and have no mechanism to find their way back. Lorna has since been on a mission to ensure disabled people are included in all areas of society. She was the founder of the ImagineBetter NGO and was involved in the development of the EGL principles alongside a group of fellow advocatesincluding Anne Wilkinson ONZM of Parent to Parentwhich was led by the visionary Dame Tariana Turia (Minister for Disability Issues at the time).

“The only thing that will change the trajectory of the lives of people with disabilities is where you have strong families, with strong vision – you have competent disabled people. Where you don’t, irrespective of the capacity of that person, you have dependency.”

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