Deserved honours

01/01/2020

Each time the honours lists come out someone opines that they are achronistic and we should be rid of them.

I disagree. It is good to recognise ordinary people doing extraordinary things Among whom, in this year’s honours list is Sir Robert Martin.

Robert Martin wanted a leader that looked and sounded like him, and when there wasn’t one, he decided to fill the gap.

Having spent more than 30 years advocating for the rights of disabled New Zealanders, Sir Robert has been made a knight companion in the New Year’s Honours list.

He has a learning disability and spent much of his childhood inside institutions and living with foster parents.

He was a witness at the inquiry into abuse in state care. The knighthood doesn’t make up for the shocking abuse he suffered there but all he’s achieved in spite of that makes him more than worthy of it.

Sir Robert said he was both proud and humbled to receive a knighthood for services to people with disabilities.

“I couldn’t have got where I’ve got to without the assistance and also the support I’ve received over the many years from other people with learning disabilities.”

It was his concern for those around the world who still did not have a voice that drove him to be an advocate.

That drive took Sir Robert right to the United Nations, where in 2018, he became the first person with learning disabilities to chair a meeting during a session.

He served on the United Nations Committee on the Rights of Persons with Disabilities for the 2017-2020 term, and was seeking re-election.

“In a lot of places around the world, people with learning disabilities are still much invisible…” he said.

“People with learning disabilities are part of our world, part of our communities and part of our societies.”

Sir Robert said he had been advocating for disabled New Zealanders for as long as he could remember, because there was never anyone else to do it. . .

Sir Robert wanted a leader that looked and sounded like him, and when there wasn’t one, he decided to fill the gap.

“That’s why I fought tooth and nail for the likes of People First, the only organisation in New Zealand that speaks for, and on behalf of people with learning disabilities.” . . 

I had the pleasure of meeting Robert at an IHC conference more than 20 years ago. He was engaging and humble. He had already achieved a lot then and has done a lot more since.

 


Thanks IHC

30/10/2019

People with intellectual disabilities and their parents owe gratitude to IHC which has just turned  70:

On 25 October 1949, 22 parents met in Wellington. A notice had been placed in the Evening Post the previous day calling for ‘parents and guardians of backward children in the Wellington district… to attend a meeting … to consider the formation of a parents’ association’. 

The meeting elected Hal Anyon as interim president and his wife Margaret Anyon as secretary/treasurer, plus two committee members. At the following meeting, on 23 November, 50 people formed the Intellectually Handicapped Children’s Parents’ Association. Within three years there were a thousand members in several branches around New Zealand. In 1994, following several name changes, the large nationwide organisation became the IHC.

Those founding parents were brave and stroppy. They had to be. In 1949 there was widespread discrimination against people with what was then called intellectual or mental handicap. This situation was a legacy of decades of eugenic assumptions in which disabled people, particularly those with intellectual or learning disability, were considered defective and likely also deviant. Widespread assumptions of ‘tainted heredity’ and shame meant parents were strongly advised to hide their disabled children away from families and communities in institutions and forget about them. Many mothers were powerless to fight the removal of their child in the face of state authorities. . .

Both our sons had brain disorders which left them with multiple disabilities.

Tom was only 20 weeks when he died. Dan survived five years without passing any developmental milestones.

Looking after him got harder as he grew physically without developing intellectually and IHC’s support was invaluable.

Just how good the organisation was, was summed up by the manager of the local branch when we were trying to work out what was best for Dan.

He said, “Let us know what you need and we’ll work out how to provide it.”

I served on the branch IHC committee for several years which increased my admiration for the work the organisation does in supporting and advocating for the intellectually disabled and its members.

They continue to face challenges, one of which has resulted in a mother taking the government to court to prove her disabled son isn’t her employer:

An independent disability advocate has filed papers asking the Employment Court to decide if people with intellectual disabilities have the mental capacity to be employers.

The government is promising to change this, but advocate Jane Carrigan doesn’t want to wait and is going to court. . .

In order to get funding, Ms Fleming has to be an employee of her disabled son, a relationship the Ministry of Health has already admitted is a mere fiction.

Independent disability advocate Jane Carrigan said for too long the ministers and their ministries have indulged in what she calls tricky and technical conduct, by creating sham employment relationships.

And in doing so, the ministers had removed themselves from their responsibilities under the New Zealand Public Health and Disability Act, she said.

“This allows the ministry to step back in the very cynical name of choice and control and say to people with disabilities – the majority of whom I might add have an intellectual disability – ‘well there you go, you’re the employer, you have the choice to employ who you want, the control to manage how your employment relationship works’.”

Ms Carrigan said that was ludicrous.

“The so-called employer is usually lying in bed with nappies on and has no capacity to manage the employment relationship intellectually. And even those people who are only physically disabled, many of them, because they are high/very high needs, will rely on a family member to do all the employment relationship stuff,” Ms Carrigan said.

Ms Carrigan said if there was an employment relationship it was between the carer and the Ministry of Health and she wanted the court to say so. . .

Thanks to those brave and stroppy parents who formed it, IHC’s advocacy has resulted in a lot of improvements to care and support for intellectually disabled people and their families in the last 70 years.

I am very grateful for the help it gave us and also aware of the help others still need and the battles still to fight.


Carpool Karaoke with Down Syndrome children

22/03/2018

Fifty mothers and their children with Down Syndrome lip-sync in carpool karaoke:

 

You can read about it here.


H&S no excuse for stupidity

18/06/2017

When our daughter was young I would very, very occasionally say it’s a matter of safety.

She knew that meant I wouldn’t be budged and because I used it so rarely, she accepted it.

Unfortunately safety, or more often health and safety has now become an excuse for stupidity like this:

Emily Broadmore wanted her two young twins Hugo and Connie left buckled in their pram on the train from Wellington to Masteron, but was told she couldn’t because of health and safety reasons.

“When I inquired where I could put the pram… I was yelled at and told that you shouldn’t even be travelling with two babies,” she said. . .
She had been told she could put her pram in the designated wheelchair space if it was available, but train staff refused citing health and safety.

Hugo and Connie were seated and the pram was stored away.

“I turned momentarily to Connie and he just dived about a metre and a half.”

Transdev Wellington, the company who run the service apologised to Ms Broadmore, but the Multiple Birth Association say it should not have come to this. . .

Of course it shouldn’t have come to this and, because of this incident, the company has clarified with staff what they expect so it shouldn’t come to that again.

But it will, not necessarily with this company, on a train, nor with a parent of twins.

But somewhere there’s someone with more authority than common sense, compassion or care who will trot out health and safety, whether or not his or her directive, as it did in this case, actually endangers health and safety rather than promoting it.


Quote of the day

01/04/2016

I was slightly brain damaged at birth, and I want people like me to see that they shouldn’t let a disability get in the way. I want to raise awareness – I want to turn my disability into ability.  –  Susan Boyle who celebrates her 55th birthday today.


Better results not ideological obsessions

30/04/2015

A new funding system for people with disabilities was the subject of this exchange at question time yesterday:

CARMEL SEPULONI (Labour—Kelston) to the Minister of Finance: Is the Productivity Commission report released yesterday indicative of a Government agenda to privatise the welfare system?

Hon BILL ENGLISH (Minister of Finance): No. It is indicative of a Government agenda to get better results for people who really need them. We are happy to debate the kind of toolset that the Productivity Commission has laid out, but I would like to signal to that member and to the Labour Party that we are focused more on getting better results and less on their ideological obsessions. What we are doing is building a system that allows Governments to invest upfront in personalised interventions for the child, the individual, or the family for a long-term impact, and to track the results of that investment. The Productivity Commission has produced a framework that gives the Government a wider range of tools. It has been heavily consulted on with the social service sector to a draft form, and now it will be further consulted on before it gives us a final report. But I expect at the end of that that the Labour Party will be out of step with pretty much everybody by sticking to its 1970s models.

Carmel Sepuloni: Does the Minister intend to establish a voucher system for social services in New Zealand?29 Apr 2015 Oral Questions Page 11 of 15 (uncorrected transcript—subject to correction and further editing)

Hon BILL ENGLISH: Yes. We are under way in establishing a voucher system particularly for people with disabilities. It is called Enabling Good Lives. It has been broadly welcomed by the disability sector. I suspect that the mass adoption of it by the Australian Government in the form of the National Disability Insurance Scheme is going to put a lot of pressure on New Zealand to further develop a sophisticated voucher system for people with disabilities. The reason why is that it gives them some choices rather than being subject to a system where the Labour Party tells the providers—

Mr SPEAKER: Order!

Jami-Lee Ross: What progress has the Government made in delivering better outcomes from social services?

Hon BILL ENGLISH: We have made considerable progress in focusing on our customers—that is, getting to know much better the circumstances and prospects of those most vulnerable New Zealanders. For instance, a child under the age of 5 who is known to Child, Youth and Family, whose parents are supported by a benefit, and where either parent is in contact with the Department of Corrections—and there are a lot of those families; around 470 of them in Rotorua, for instance—is around five times more likely to end up on a long-term benefit and seven times more likely than the average to get to be in prison before the age of 21. In the light of that information, we feel a moral obligation, as well as a fiscal one, to act now to reduce the long-term costs, and we are not—

Mr SPEAKER: Order!

Carmel Sepuloni: Does he agree with the findings of the draft Productivity Commission’s report he commissioned that the Government faces incentives to underfund contracts with NGOs for the delivery of social services, with probably adverse consequences for service provision; if so, does he agree that greater contracting out could harm service provision?

Hon BILL ENGLISH: I agree with the first one but not the second one. The Government often does deliberately, as a result of Government policy, actually, pay less than the full cost of services, and often the users of those services need a higher level of more sophisticated service that what we currently offer them. There is no evidence at all that contracting out, as the member calls it, will reduce service provision. Sometimes that is the right way to do it. For instance, the Government owns no elderly care beds in New Zealand. It is all contracted out. That has been a bipartisan approach for many years with a highly vulnerable population. There are other areas where there are benefits from competition and also benefits from cooperation.

Jami-Lee Ross: What results has he seen from investment in Better Public Services?

Hon BILL ENGLISH: One of the first results we are seeing from taking an investment approach to public services is a much better understanding of our customers. The reports, now published 6-monthly, into the welfare liability have lifted the lid on a very complex ecosystem of dependency. Now we are starting to take initiatives in order to change the way that system works. For instance, around 70 percent of the people who sign up for a benefit in any given month have been on a benefit before. They are long-term regular and returning customers. In the past we have thought that because we found them a job once, that was the end of it. In fact, they need sustained support and employment, and we expect to be taking more measures in order to back up that initiative. But there will be hundreds of others that will involve contracting out, will involve competition, will involve the private sector, and will involve better results. . .

Carmel Sepuloni: Does he agree with the finding of the report, which he commissioned, that “Problems with contracting out are often symptoms of deeper causes such as the desire to exert top-down control to limit political risk.”?

Hon BILL ENGLISH: Yes.

Carmel Sepuloni: Does he agree that the Government needs to take responsibility for system stewardship and for making considered decisions that shape the system, including taking the overarching responsibility for monitoring, planning, and managing resources in such a way as to maintain and improve system performance?

Hon BILL ENGLISH: Yes, the Government can do a better job of what the Government does. We are still unravelling the damage done by the previous Labour Government to our social services delivery, where that Government turned it into what I would call a dumb funding system. Communities and families have an important role as well as Governments—in fact, a more important role. In fact, one of the programmes that the commission refers to is Whānau Ora, which is designed around the radical proposition that a lot of our most dysfunctional families can actually heal some of their own problems and improve some of their own aspirations. . .

This exchange shows a stark difference between National and Labour.

National is determined to improve the delivery of social services, give people with disabilities more choices and reduce dependence.

Labour which is still ideologically opposed to private provision of services even if that gives better results.

And it’s not just Labour which has the wrong idea of welfare and the government’s role in services.

Lindsay Mitchell writes on Green MP Jan Logie’s contention that social problems aren’t solved one individual at a time:

If problems aren’t solved “one individual at a time”, when it is individuals who abuse or neglect each other, when it is individuals who successfully resolve to change their behaviour, what hope? And why have role models eg Norm Hewitt to show what individuals can achieve? Why have organisations like AA who focus on each individual owning and addressing their problem; in living one day at a time to break their addiction?

Logie believes in deterministic explanations for human behaviour. Causes are outside of the control of the individual. For instance, colonisation and capitalism cause social chaos to entire groups. Therefore the largest representative collective – government – must play the major remedial role.

And she has the gall to talk about private service providers securing an “ongoing need for [their] services”.

When for the past forty odd years  government policy has been creating and increasing social problems through the welfare state.

This reinforces this morning’s quote from Thomas Sowell: Although the big word on the left is ‘compassion,’ the big agenda on the left is dependency.


Rural round-up

23/12/2013

Positive steps to help mental health – Terry Tacon:

Like the mountain that dominates the skyline in Taranaki, the province’s farming industry has a dark side – the effect problems can have on farmers’ mental health.

Recognition of the issue prompted the region’s Rural Support Trust, with the assistance of Like Minds Taranaki, to get behind a publication called Feeling Down on the Farm – Mental Health in Rural Taranaki.

It’s a bid to give farmers somewhere to turn when they have problems and follows a similar publication in southern New Zealand in 2010. . .

Riding high on kindness – Tim Fulton:

A dairy family in Waikato has been part of a daisy chain of generosity that started with tanker drivers upgrading a young man’s trike.

Andrew Oliver, from Puketaha, had been rattling around on his trusty metal steed for a couple of decades.

So Fonterra’s tanker drivers rallied to give him something more modern, complete with a number plate proclaiming Andrew No.1 Fonterra Fan.

Andrew, who is almost 30, has a rare form of impaired brain development known as Fryns-Aftimos Syndrome.

He’s the only New Zealander with the condition and one of just 15 worldwide. He also has five types of epilepsy. . .

Andrew has spell-binding impact

Andrew Oliver inspired Andrew Lusty from the start.

As a Fonterra tanker driver, Andrew Lusty found quickly he would hear the other Andrew wheeling along on his trike before he could see him.

Drivers receive a message on their cab screens saying there is a disabled person on the Olivers’ farm to watch out for but Andrew usually races to the dairy shed like a whirlwind.

One night on the job driver Andrew gave his mate a new Fonterra hat. As he drove to the next property he did some thinking, then suggested to a colleague it would be a good idea to get Andrew a new trike. . .

Food security: an urban issue – Caspar van Vark:

According to the United Nations human settlements programme, UN Habitat, Africa is the fastest urbanising continent in the world. By 2050, 60% of all Africans will be living in cities.

But urbanisation in Africa is not going hand-in-hand with widespread economic growth: many cities are in fact seeing a proliferation of urban poverty. Food insecurity and undernutrition is therefore also increasingly an urban issue, and with urban people more dependent than rural populations on whatever food they can afford to buy, it’s tied closely to livelihoods.

A new project by the World Vegetable Centre (AVRDC) is trying to address this by pulling together the issues of urban growth, migration, livelihoods and undernutrition, and drawing specific attention to the role of peri-urban ‘corridors’ of production outside cities. . .

Christmas wishes on-farm – Bruce Wills:

. . . Like farming the media isn’t immune from having its share of critics as it performs an invaluable role.  The term ‘fourth estate’ was coined for the media in the 17th Century to emphasise its importance but independence from Government.  While the traditional print media faces its challenges I agree with the journalist Rob Hosking; this is evolutionary pain as opposed to being an extinction event.  I believe that media quality will deliver readership quantity.

The shame perhaps being that quality can be somewhat uneven.  In the past couple of weeks there have been some major developments on the trade front but you wouldn’t know it from the scant attention it received from the broadcast media.  I was told one media person was scoffing over the newsworthiness of a tariff agreement with China-Taipei, which is worth $40 million to ‘NZ Inc’ in year one and over $70 million by year four.  Forget that.  They wanted to talk up the prospects of drought instead. . .

Fresh produce industry welcomes New Zealand Government’s recommendation to establish food safety centre:

The Produce Marketing Association Australia and New Zealand (PMA A-NZ), the leading trade association representing companies from every segment of the fresh fruit, vegetable, and floral supply chain, has welcomed an in-principle acceptance by the New Zealand Government of a recommendation to establish a centre of food safety science and research in New Zealand.

The establishment of a food safety centre was one of 29 recommendations released on Wednesday in the Dairy Food Safety Regulatory System report commissioned on the back of investigations into the Fonterra food safety scare, which resulted in New Zealand dairy products being blocked from entering foreign countries.

“A food safety centre in New Zealand will draw attention to the important issue of food safety and traceability preparedness,” CEO of PMA Australia-New Zealand Michael Worthington said today. . .


Good evaluation crucial to protect vulnerable

06/05/2013

I used to evaluate residential services of intellectually disabled people.

We worked in teams of three and each team had at least one person who had a family member with a  disability.

We never worked in our home areas but we still had a personal interest in high standards of care and would evaluate homes with the idea of how we’d feel about a family member living there.

We talked to managers, staff, residents and their families and built up a comprehensive picture of the services provided and people providing them.

We were there not just to give services a warrant of fitness but to ensure the people receiving them were enjoying the ride. We weren’t just looking at safety but at comfort and quality of life.

We gave a verbal report before we left. the team leader then did a comprehensive written report and also worked with staff to implement recommendations for improvements.

Reports went to the Ministry of Health and any service which didn’t meet acceptable standards would lose its funding.

If that system of evaluation was operating properly there would have been no question of a horror house like this one staying open.

 A mute teenager was left alone in a paddock to eat grass like an animal – one of a catalogue of horrors from an investigation into a home for the intellectually disabled.

Clients at Parklands, a residential facility in Pukekawa, south of Auckland, were forced to live in crowded, dirty conditions surrounded by more than 35 small dogs, fed inadequate food, neglected by untrained staff, provided with no meaningful activities and denied access to their own money, according to the Ministry of Health. . .

The residents have been let down not just by the people who were supposed to be looking after them but by the system that checks up on the provision of services.

It’s not enough to provide funding for services. A high standard of evaluation is crucial to ensure the protection of vulnerable people who receive them.


Old system wrote beneficiaries off

09/10/2012

Interesting statistics of the day from Eric Roy:

In 2004, 66% of people on Sickness Benefit and 45 % on Invalids Benefits were interested or very interested in looking for work.

Of 539,000 disabled people surveyed in 2006, more than 40% were working – 75% full time.

The current assessment system for people receiving Sickness or Invalids Benefit tells us a mere 6.5% are fit for part-time work. . .

It’s difficult to believe that so many people on Sickness and Invalids benefits were interested in working eight years ago but only 6.5% are fit for at least part-time work now.

Simply put, the old system has been writing these people off and ignoring the fact that work is important; socially, financially and therapeutically.

National wants a welfare system with services and attitudes that help people reach their potential and change their lives for the better.

The Opposition and their supporters who are criticising National’s welfare reforms are arguing against helping people help themselves.

Some people will never be able to support themselves but that is no reason to not encourage, and where necessary help, those who can to do so.

 

 


Govt will pay family caregivers

13/06/2012

When you have young children, finding someone to look after them is necessary if you are to have a break.

That isn’t always easy and it is even more of a challenge if the child has a disability.
We were fortunate when our son, who had a brain disorder and passed none of the developmental milestones, was alive that we had family and friends near by who were willing to look after him for us.

We were eligible for respite care which meant those sharing the care could be paid, but that generosity applied to strangers or friends, not family.

I understand the thought that baby sitting family members is what grandparents, aunts and uncles do for each other.  But there is extra responsibility and demands in caring for children with disabilities.

If they’ve multiple disabilities it gets harder as they grow physically without developing intellectually. This places more demands on the parents, increasing the need for breaks and requiring more from those who take over the care.
We never had to face the decision of putting Dan into permanent care because he died when he was five. But many other parents face that decision and some choose to keep their adult offspring at home.
That imposes costs on them, including the opportunity cost of not being able to do paid work. Adults with disabilities do receive a benefit but that is for their needs, not recompense for their parents who are caring for them.
The family members providing care do so at cost to themselves while saving public money because the people with disabilities would be eligible for full time care.
That strangers could be paid to do the same work family members undertake at their own cost was one of the motivations for taking the government to court.
It found in the families’ favour and Health Minister Tony Ryall says the government won’t appeal.

“The Government accepts the current Health Ministry policy of not paying the close family carers of adults with disabilities needs to change, and we will not be seeking leave to appeal this decision to the Supreme Court.”

“We have begun the process of reviewing the MOH policy with respect to family caregivers. We expect a new policy addressing the issues raised in this case to be substantially developed this year.
“The future policy needs to balance the interests of those who are being cared for, the families and the taxpayers. It will address the discrimination. But it must be affordable.
It must also contain safeguards for the people with disabilities to ensure that they are getting the care they need.
These are vulnerable people and while in most cases they will be loved and looked after well by families, there is the opportunity for exploitation and abuse.

Residential services for people with intellectually disabled people are independently audited and evaluated to ensure those in care get the physical, emotional and intellectually support they need.

That could be a step too far for families but if people are taking money to care for others there must be something in place to ensure the right to be paid is balanced by the responsibility to look after those in their care properly.


Awesome

22/01/2012

We never had to tell our sons they had disabilities.

They both had brain disorders which left them profoundly handicapped and as far as we could tell they couldn’t understand anything we told them.

But we did have to explain about disability to their sister who was aged two when her first brother was born and four when the second arrived. We also had to explain to lots of other people – children and adults.

We tried to do it simply and honestly, describing the severity of the disabilities without in any way taking away from our sons their humanity and right to be treated as people in their own right.

The question of what to tell children who have a disability,illness or other condition which makes them “different” and when to tell them, is one of the many challenges facing their parents.

The best example I’ve seen of it is The day I told him he was “awesome” part one and part two at Autism and Oughtisms.

Awesome is an overused and often misused word, but in its true sense is the appropriate one for these posts. I am in awe of the sensitivity and creativity the mother showed.

Apropos of this, I recommend two very good novels.

Crash by William Taylor – the story of Poddy who has Downs Syndrome and Yes by Deborah Burnside – the story of Marty, a teenager with autism.

 


Last place wins hearts

21/08/2011

Every now and then a heartwarming story circulates by email telling how a young boy with disabilities lost a race but won hearts.

I’ve no idea if it’s true, but the last placing winner is:

Yesterday I went to watch my five year-old son run the cross-country at school. On the way home in the car I was shuddering and wiping tears from my eyes. I’m going to tell you what happened.

My son attends a mainstream school, as far as the school grounds and school uniform go. But his class is a “satellite class;” all the students in that single classroom have special needs, and the classroom resources and teachers are from a special needs school based at a different location. The whole mainstream school – including the classroom my son attends – took part in the cross-country during the school day. Parents were invited to attend.

The children run by age group, so my son’s grouping was early on in the day. He was in the second “heat” (basically, the second rather large grouping of children for that age group). The group included only a few children from the special needs class, the rest of the many children were all mainstream.

As the starting gun fired he set off, me on the side-lines watching on proudly. Proud because he understood what was required of him on this occasion, and proud because he was able and willing to do it . .

.

You can read the rest at Autism and Oughtisms.


Thank You Erma Bombeck

21/02/2010

Erma Bombeck would have been 83 today. We never met, but through her books I felt like she was a friend and I will always be grateful for her writing which makes me laugh and makes me cry.

I first came across her books in San Francisco. When we came across the bookshop  I thought I’d died and gone to heaven – three floors of books, comfortable chairs, a cafe, loos and it was open at 10.30pm.

One of the several books we walked out with was Erma’s  Motherhood, The Second Oldest Profession. It’s a collection of mostly humorous tales about real life mothers and mothering. But among the funny stories are some poignant ones, including A Special Mother.

It tells of a conversation between God and an angel about choosing which baby goes to which mother.

. . . Finally, He passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one, God? She’s so happy”

“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter? That would be cruel.”

“But does she have patience?” asks the angel.

“I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it.” . . .

It was just a couple of years since our son who’d had multiple disabilities, had died and it moved me, but not as much as the next chapter entitled Ginny.

It tells of a woman bringing her sister a copy of The Special Mother. Ginny who’s son is profoundly disabled, isn’t impressed. But when her sister leaves, she catches her own reflection in a mirror.

She was stunned by what she saw. A thirty-year-old woman with hundred-year-old eyes. Eyes that were dull and listless. Eyes that held no joy. Eyes that looked but never seems to see anything that interested them. Eyes that reflected no life – only pain.

. . . She knelt beside B.J. “Look B.J. there’s something I’ve got to tell you. I’m no saint. It’s important to me for you to know that. I have cursed you for my guilt, my exhaustion and my life. I have questioned why both of us were born. I haven’t figured out yet why He brought us together. I only know there is something special between us . . . I couldn’t bear it if you were not here, or if you had never been. . .

“B.J. I’ve never made any demands on you. I’ve never asked you for anything, but right now, I want you to say ‘Mama’. I know it’s not going to be perfect, but try. Just make a sound. . .

The saliva came out of the conrer of B.J.’s mouth. No sound came forth. then Ginny noticed his eyes. they stared back into hers in a way she had never seen before. They didn’t focus right away, then they looked at her for the first time. . . He knew who she was!

. . .B.J. had just spoken his first word with his eyes. He had called her ‘Mama’.”

This was the first thing I’d come across which expressed the reality of life with a disabled child and even now, more than 15 years after our son’s death, I still can’t read it without crying.

Both of these are still under copyright which is why I haven’t copied them in full. A search for Erma Bombeck, special mother or disabled child will take you to several copies of A Special Mother. I haven’t been able to find a copy of Ginny online.


Parking problem

12/11/2009

Barry de Geest was born with physical disabilities because of the thalidomide prescribed to his mother when she was pregnant.

He grew up in Oamaru when I was a child and attitudes towards people with disaiblities were a lot less sensitive than they are now. But I remember him being widely admired for his positive attitude and many accomplishments. 

He lives an independent life but he’s come up against a parking problem. He was given a parking ticket, even though his disabled parking permit was prominently displayed.

He wrote to the company and explained. They replied he should still have paid to park.

But how does an armless man use a parking machine?


Too poor to help

17/06/2009

One of the criticisms of right wing policies is that they place too much importance on economic growth.

The critics fail to understand that economic growth is a means not an end.

Only by growing the economy can a country afford the education, health and social services it needs.

Without economic growth a country is too poor to help those of its citizens in need, too poor for instance to provide a computer which gives a teenager with cerebal palsy a voice.

She is only able to signal yes and no using flicks of her eyes.

After 14 years without a voice a state of the art communicator, the my tobii arrived in Shenaragh’s world, a Swedish made computer which uses eye tracking technology.

. . . But the $40,000 communicator has only been on loan to Shenaragh – for a few weeks last year, in April this year, and a week now in June.

She is on a long waiting list subject to Ministry of Health funding that has recently been curbed.

$40,000 isn’t a lot of money in a health budget of billions. But when the budget isn’t big enough for the demands placed on it, $40,000 saved in one area can make a big difference in another.

The state isn’t the only avenue open for funding. There may be charitable people or organisations prepared to help, but their ability to do so is also affected by poor economic performance.


Danny Boy

17/05/2009

Twenty years ago today we welcomed the arrival of our second son, Dan.

His then-four year old sister wasn’t impressed. She’d wanted a sister because she knew brothers died.

We didn’t know it then, but she was right. A few weeks later it was confirmed that Dan had the same brain disorder which had killed his brother Tom when he was just 20 weeks old.

Dan defied predictions and lived much longer, surviving until 10 days after his fifth birthday. But he passed none of the developmental milestones and could do no more the day he died than he could when he was born.

It’s now 20 years since he was born, almost fifteen since he died. A lot has happened since then, some of it wonderful, some very bad and most of it in between.

Every now and then we think about the boy and young man Dan might have been and we do so with rose tinted specs, because while children who die can’t do the good things parents hope they might, they don ’t do the bad things we dread either.

When Dan’s condition was diagnosed and after he died a lot of people said how lucky we were we had our daughter. I agreed, though not for the reasons most seemed to be thinking of. Children aren’t like pieces in a dinner set which, if one gets broken, can be replaced with another.

However, as well as letting me experience the joys of parenting, having another child also meant I didn’t suffer from any delusions that I’d be a perfect mother with perfect children. 

While I’ve blogged quite a bit about our sons, and called them by their names I say little about our daughter because I don’t think it’s fair to her. However, having made that comment about neither of us being perfect, I feel the need to clarify that that doesn’t mean we’ve had any major problems, just that she did the things normal children do, some of which parents wish they wouldn’t. 

But today I’m not thinking about those things, just remembering the wee baby meeting his four year old sister and the excitement and love we experienced 20 years ago. 

We named our baby Dan, not Daniel, and that’s what he was called, never Danny. But summer had gone and the roses were fading when he died which made this song even more appropriate for his funeral. 

Because it’s New Zealand Music Month, I’ve chosen the version sung by Hayley Westenra and dedicate it to all the other members of that non-exclusive club for bereaved parents.


Aiming for Italy, Landing in Holland

10/05/2009

The images for Mothers Day are usually of happy families with happy, healthy children.

That’s not the case for all mothers and one who knows what it feles like when your baby isn’t the happy, healthy one you expected is  Emily Perl Kingsley, who was a writer for Sesame Street.

Her son, Jason, had Down Syndrome which prompted her to write this:

WELCOME TO HOLLAND

 

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

 

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.


Internet opens doors on disability

03/05/2009

In 1987 faxes were new and we’d never heard of emails, the internet or blogging.

When we got the diagnosis our son had a degenerative brain disorder we spread the word by phone to family and friends in New Zealand and letter to those abroad.

Two years later when we got a similar diagnosis for our second son technology hadn’t moved much further and communicating with family and friends, and making contact with other parents whose children had similar problems, had to be by old fashioned means.

A couple of decades on, the difference the internet has made was brought home to me by the success of Blogging Against Disabilsm Day .

Hundreds of people posted on various aspects and issues which affect people with disabilities and their families including access, art, education, healthcare, language, parenting and politics.

Diary of a Goldfish has created a wonderful resource which will enable people who are dealing with disabilities to share expereiences and learn from each other.

Blogging Against Disablism Day, May 1st 2007


Losing fear and ignorance of disability

01/05/2009

Dan had a degenerative brain disorder which left him with multiple disabilities. He passed none of the developmental milestones so could do no more when he died, 10 days after his fifth birthday,  than he could the day he was born.

He didn’t appear to see or hear, he couldn’t support his head or move himself. He couldn’t even smile.

We used to say he couldn’t do anything but in spite of that he taught us a lot.

Because of Dan we lost the fear and ignorance we might have had about disability and through him we learned to accept people as people regardless of what they can or can’t do.

Had he been born a generation earlier, Dan would almost certainly have been put into an institution rather than living at home as he did. That wasn’t always easy for us because he required 24-hour care and while the policy had changed, the system wasn’t up to speed with the support needed to meet the challenges of life in the community for people with multiple handicaps and their carers.

But we had wonderful support from family and friends, his doctors and organisations like Plunket and IHC and we weren’t aware of any discrimination against Dan, or us when we were with him.

Not everyone’s experience is so positive. That is almost always because of ignorance and we have Dan to thank because we’re not guilty of that.

This is posted as my contribution to Blogging Against Disabilism Day – and I tip my hat to In A Strange Land for directing me to it.


In sickness . . .

24/03/2009

The traditional marriage vows are also applicable to parenting.

When you have children you have them to love and to cherish, in sickness and in health.

That doesn’t mean that it’s easy when a child is ill or has a disability, but it does help explain why most parents sacrifice so much for and give so much to their children both because of and in spite of their problems.

When we were told our son had a degenerative brain disorder, that he was unlikely to live long and if he did he’d be profoundly disabled, I didn’t know which would be worse.

He died soon after but two years later his brother was born with the same condition and lived until just after his fifth birthday which gave me the answer – both disability and death are worse than the happy, healthy children we all hope for. But you can’t give your child back nor do you stop loving him because his brain doesn’t work properly.

Caring for a child with multi handicaps isn’t easy, but when Dan was alive I often wondered if it was less difficult with someone like him who was totally dependent than it might be with a child whose disabilities weren’t quite as severe but still left them well behind “normal” development.

Dan could do nothing for himself, didn’t appear to see or hear and his only communication was crying so there was no feedback or affection from him but at least he couldn’t hurt himself or other people or misbehave.

Parents of children with severe autism have the challenge of dealing with people who are physically able but socially and often intellectually disabled and as Macdoctor explains in response to the story of the 18 year old autistic girl who was jailed  there is a large hole in the system  which means people with these sorts of conditions and their families don’t get the support they need.

I fully support the theory of deinstitutionalisation of people with intellectual disabilities and mental illnesses but the practice has been flawed because of a lack of training for care givers, lack of support for the people and their families and as always, a lack of funding.

But there are a couple of  glimmers of hope, Innovative Learning of Dunedin is:

. . . joining forces with two international partners in a $3 million deal to help fight the spreading “epidemic” of autism.

Innovative Learning, headed by chief executive and psychologist Dr Mike Reid, of Dunedin, will launch two new certificate programmes later this year.

The certificates are the result of a partnership between his company and Antioch University Santa Barbara, a private institution based in the United States, and will also be distributed in the United Kingdom by Ludlow Street Healthcare.

The programmes aimed to improve the care given to those diagnosed with a range of autism spectrum disorders (ASD) by upskilling those who came into contact with them – from teachers and carers to GPs and other health professionals, Dr Reid said.

And yesterday, John Key told Breakfast he would look into the matter.

Now isn’t the time to be expanding budgets but ensuring people with mental illnesses and intellectuall disabilities have the care and support they need must be a priority.


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