The following is the text of the talk given by Zoe Picton-Howell, an English qualified solicitor, now resident in Scotland, as one of the speakers at the Scottish Parliament Festival of Politics event “Better Rights, Better Lives, Better Futures” in August 2009. The event which was open to the general public, aimed to examining the impact of Scottish Devolution, ten years on, on the rights of Scotland’s Disabled Children.
(c) Zoe Picton-Howell
“1999 was a proud year for Scotland. A small nation with a strong tradition of social justice. A nation famed for its staunch opposition to unfair policies, imposed by Westminster. A nation proud of its state education; its legal system and its National Health Service. A nation where people mattered.
In 1999 Scotland’s Parliament, which had adjourned 292 years earlier reconvened. The Scottish people would now make their own laws in areas such as health, education and social care. Even before 1999, Scottish Acts of the UK parliament often had a more social justice flavour to them than their English counterparts.
The rebirth of the Scottish Parliament, a proud moment in Scottish constitutional history, was sandwiched between two crucial developments in international law for Scotland’s disabled children. Ten years earlier in 1989 the United Nations adopted its Convention on the Rights of the Child. This gave children worldwide, including in Scotland, numerous rights; to education; to health care; to be listened to and for disabled children, in particular, a right to a full and decent life. The Children’s Convention was ground breaking, the first international treaty to recognise disability as a human rights issue.
Twenty years later and ten years after Scottish devolution, this year saw the rights of Scotland’s disabled children enhanced further when the UK government, ratified the new United Nations Convention on the Rights of Disabled People.
Sharing the jam in this momentous constitutional sandwich with the new Scottish Parliament was 1998 Human Rights Act. An Act to bring home the right enshrined in the European Convention of Human Rights. Enshrining, for example, the right to life; the right to an effective education and the right to a family life into Scottish and English domestic law. The Human Rights Act made it possible for the first time to bring a case in a Scottish Court based on an alleged breach of a European Convention article, avoiding going to Strasbourg to enforce Convention rights.
The Children’s Convention, the European Convention with the Human Rights Act and the new UN Convention on the Rights of Disabled Persons form a framework of international and European human rights law, protecting Scotland’s disabled children.
But there is more. Scottish Devolution did not put an end to the protection provided by existing UK legislation, such as the Disability Discrimination Act.
Scotland’s new Parliament also introduced new legislation. For example, its Education (Additional Support for Learning) (Scotland) Act. It also created the post of Scottish Commissioner for Children and Young People. A post strongly advocated by Child Rights specialists worldwide. The Scottish government enthusiastically adopted policies such as “Getting It Right for every child” aimed at improving every, including every disabled child’s life, in Scotland. New child rights officers joined the Scottish civil service.
With this framework of international and European human rights law; with equally helpful UK and Scottish domestic legislation and policies, together with a strong public sector and a proud tradition of social justice, life for disabled children living in 21st Century Scotland seems pretty good. Everything suggests their rights are protected.
But, is this the world Scotland’s disabled children live in today? Well yes, at one level, this is the legal and political world in which Scotland’s disabled children live. Everything I have described does exist today. But sadly this is only part of the picture.
Talk to any disabled child; any parent of a disabled child or any expert in child disability in Scotland and they will tell you a very different story. A story of having to “fight” for the very basics. A fight for health care; a fight for school places; a fight for respite. No-one with an interest in Scotland’s disabled children has to dig very deep to learn of a world
· where despite Scotland’s supreme civil Court judging that a lack of bathing facilities amounts to inhuman and degrading treatment in breach of the European Convention, in most of the wards at both Edinburgh and Glasgow’s children’s hospitals, hospitals with international reputations for excellence, children with physical impairment have no access to bathing facilities;
· where a bright child with physical impairment living in Scotland’s capital city cannot attend his local school because it will take two years for a stair lift to be installed;
· where parents, children, young people or staff who appropriately raise concerns about breaches of disabled children rights are subjected to victimisation, bullying and abuse from public service managers;
· where a disabled child is told she cannot join a local club, “in case the sight of her upsets the other children”;
· where a hospital provides computers for children to use, but none can be accessed by children with disabilities;
· where parents of disabled children are told their child will only have life saving treatment when needed, if an alert is placed on their child’s hospital file- the default and assumption being that parents would not want the life of their disabled child saved;
· where £34 million provided by the UK government to provide support for Scotland’s disabled children, disappears without a trace with no apparent benefit to those children.
The discrepancy is clear. The discrepancy is blatant. The discrepancy is unlawful.
In the words of the UN Committee reporting on the UK, including Scotland, last October, “children with disabilities continue to face barriers in the enjoyment of their rights, guaranteed by the Convention...”,
So why are the lives of Scotland’s disabled children so different from the ones envisaged by the law and policy drafters and from the lives they deserve?
They reasons are many, here are a few:-
Firstly, the Human Rights Act did a lot of good. It made it possible to protect European Convention rights in the Scottish Courts. In theory helpful. In practice not so for disabled children and their families.
Human Rights cases are often brought by prisoners. For example, the bathing case mentioned earlier. This is not surprising. Prisoners have a familiarity with the law. Most parents of disabled children don’t. To qualify all lawyers must study criminal law. Few lawyers in Scotland have the knowledge to help families of disabled children.
It is a rare parent who will want, let alone have the money, time or energy to pursue a public body thorough the Courts. Parenting a disabled child is a 24/7 job, requiring far greater expenditure combined with far less opportunity for paid employment than parenting generally. There is little or no time for normal life, let alone to embark on a legal action.
Prisoners are also unlikely to share the common fear of a disabled child’s parent of being wrongly labelled as “a trouble maker,” when raising legitimate concerns.
Additionally, the Scots are justly proud of their public services, increasing their tendency not to complain when things go wrong, even when they go very badly wrong. The onus must not be on families of disabled children to “fight” for their children’s rights, whether through the Courts or in other ways. Disabled children’s rights must become automatic. Service providers must see it as their duty to uphold disabled children’s rights, not as happens far too often today, to fight the families standing up for those rights.
This tendency is only made worse by many of the myths which have grown up around the Human Rights Act. These myths are very damaging. They give a false view of rights and encourage the negative treatment of those who rightly assert their child’s rights.
One such case concerned a prisoner on the roof top protest being given Kentucky Fried Chicken, supposedly because this was his Human Right. There is no human right to KFC. What actually happened is that food was given to the prisoner as part of the delicate negotiations to end the roof top siege, to avoid injury to staff, the prisoner and others. In many cases papers report ludicrous HRA claims, but don’t report that the claims fail. Parts of the media have their own agenda when it comes to encouraging a negative perception of the HRA and the European Convention. The Convention effectively introduced a law of privacy into the UK. A law, sections of the media don’t want.
A 2003 report looking at the implementation of the Human Rights Act within the NHS showed that the managers of 73% of NHS trusts in England thought the Human Rights Act had no relevance to their work. In a similar vein, when the Scottish Government conducted a consultation on the Children’s Convention a couple of years ago, a senior NHS manager, working in children’s services offered me her invitation to the consultation, telling me that child rights had no relevance to her work.
These points lead to the same conclusion. Training in child rights must become compulsory for everyone working with children and also for all lawyers and policy makers.
It is also pointless governments signing up to international Conventions or passing laws, without providing funding to give Scotland’s disabled children decent lives. The United Nations Committee writes guidance, called General Comments as to how the Children’s Convention should be implemented. The Scottish and UK governments would do well to act on this guidance. The Committee tells States that funding for disabled children should be “ring fenced”. The current Scottish administration entered a concordat with local government. This devolved power in many policy areas from national to local government. It also stopped most ring fencing of funding- enabling the £34 m allocated by Westminster, mentioned earlier, to disappear without a trace. The UN Committee says more about public spending. States should use the maximum resources available to meet their Convention obligations. This does not mean, that the UK only has to recognise a right if it has sufficient resources to do so. The Committee explains that the UK and other states must prioritize spending to meet the rights of children, including disabled children, over spending in other areas. The Committee has said that the UK not only has sufficient resources to meet its own Convention rights, but is also well placed to help other states. Families with disabled children are frequently told resources are not available for their child. Whatever your political allegiances, you will no doubt be able to think of areas of public spending which could and perhaps under international law should, be redirected to fund Scotland’s disabled children’s rights.
Finally, I would advocate a Bill of Children’s Rights incorporating the Children’s Convention into Scottish and English law. The Scottish government says it will review the compatibility of Scottish laws with the Children’s Convention on a case by case basis. This is better than nothing, but to borrow a phrase from Barack Obama “better is not good enough”. All laws and policy must comply with the Convention, not just those the government has had the chance to review. Moreover, it is crucial that laws are reviewed to ensure they meet disabled children’s rights. A stricter test than just meeting children’s rights.
A Bill of Rights will increase awareness of the Convention and encourage public sector staff to receive training on the Convention. It will also be an opportunity for the UK to rectify the Conventions weaknesses. Currently, when the Convention is considered, such as when the UK reports, roughly every five years, to the UN Committee, or for example, when the Convention was debated in this very Parliament earlier this year, disabled children are largely neglected. Despite being some of Scotland’s most vulnerable children and despite facing far greater difficulty meeting their Convention rights, disabled children are still overlooked, forgotten or simply ignored. Partly this is due to the way the Convention is drafted. There are also other reasons too numerous for me to discuss today. A Bill of Rights incorporating an improved, disabled child friendly version of the Children’s convention could rectify these shortcomings. If Scotland gets it right for disabled children, Scotland gets it right for all children.
The Scottish government’s consultation on the UN Committee’s recent report on the UK was entitled “Are we there yet?”. The existing framework of international Conventions, domestic laws and policies mean that disabled children have at least started on the road. But there is still a long journey ahead. A devolved Scottish Parliament means that Scotland has its hands very firmly on the steering wheel. Health, education, social services, to name a few, are some of the key policy areas which affect the human rights of disabled children. All policy areas devolved to the Scottish Parliament. A nation is judged on how it treats its most vulnerable citizens; Scotland through its devolved Parliament has the means to give Scotland’s disabled children “Better Rights, Better Lives, Better Futures”. Let’s just do it.
Thank you
(c) Zoe Picton-Howell
August 2009
References
— Quinn, Degener et al, “Human Rights and Disability”, United Nations, New York, 2002;
— O’Neil, A, “Limited Government , Fundamental Rights and the Scottish Constitutional Tradition”, O’Neil, Edinburgh, 2008;
— Keating, Stevenson et al, “Does devolution make a difference? Legislative Output and Policy Divergence in Scotland”, Journal of Legislative Studies, 9:3, 110-139, 2003;
— Picton-Howell, Z, “Do Children in the UK with Severe Disability have Human Rights?”, LLM Dissertation, 2008;
— Office of the High Commissioner For Human Rights, General Comment No.9 (2006), The rights of children with disabilities, CRC/C/GC/9;
— Office of the High Commissioner For Human Rights, General Comment No.5 (2003), General measures of implementation of the Convention on the Rights of the Child (arts.4, 42 and 44, para 6), CRC/GC/2003/5 ;
— Rights of the Child UK - Rock coalition, see http://www.crae.org.uk/protecting/uk-law.html
