Disability: still taboo in family placement?
Cousins, Jennifer
The cultural context of disability
Most professions have their glamorous side: the surgeon, the human
rights lawyer, the sports teacher and, in social work, the child
protector. Unfortunately, recent cases remind us that child protection
still grabs the headlines and also tends to grab the funding. As Olive
Stevenson stated many years ago:
Child abuse sometimes seems like the cuckoo in the nest,
remorselessly pushing other chicks out, voraciously consuming their
share of resources. (1992, p 19)
Anything to do with disability, however, comes a long way down the
resources and status hierarchy. Disability ranks alongside
medicine's geriatrics and anaesthetics, and for the same reasons:
like the old and the unconscious, disabled people are readily
marginalised. Anyone working with 'them' or arguing for
resources is also sidelined. There is little which is prestigious about
the world of disability. At the very best (or worst?) disability evokes
pity and charity.
Even in the UK's relatively liberal society, the
marginalisation of minorities is still a live issue. If asked how many
prominent people in influential public positions are disabled, most
respondents would agree that the number is small. And if the criteria
were to be people who are disabled, Black and female, the number would
shrink even further.
It took the last Paralympics to prompt the question posed in The
Guardian newspaper in September 2008, 'Why are there so few
disabled people on TV?':
This invisibility is significant, because of the way it affects the
disabled population at large. Representation is a form of respect, and
also of acceptance; the more visible people are, the less prejudice they
are likely to attract. (Cochrane, 2008)
Cochrane writes that a veteran BBC reporter, who is blind,
uncovered a particularly interesting story on the late shift at
Westminster but this was handed to another reporter to present on the
Ten O'clock News. The editor in charge wanted what he called
'a proper political correspondent' on screen. The blind
reporter won a five-figure payout as a result. It is evident that,
despite the 1995 Disability Discrimination legislation and Equal
Opportunities policies, influential institutions are still wedded to
attitudes that make genuine equality impossible.
It is dispiriting to find that even where social exclusion is
specifically addressed, disability fails to be highlighted. In a
well-informed publication undertaken for the office of the Deputy Prime
Minister in 2004, entitled Including the Socially Excluded: The impact
of government policy on vulnerable families and children (Buchanan,
2007), the words 'disabled', 'disability' and
'disabilities' appear once each. There is no reference to
'impairment' or 'special needs'.
Before going any further, attention should be drawn to a particular
contradiction which challenges everyone involved with
'minorities', namely how to retain an inclusive perspective on
disability while identifying difference in a helpful way. Disabled
people are not a homogenous group and 'they' are not a
separate species to be hived off into separate teams of social workers
(or, for that matter, to be described in a special lecture or article
devoted to disability). The issues should be part of mainstream
discourse. However, disabled people (whatever their individual
impairment and personal differences) do share a distinct structural
relationship with a discriminatory society and may have some extra
requirements in common that should be valued and recognised. As this is
less likely within the mainstream, there is, it can be argued, a
justifiable reason why disability should be explored as a discrete
issue.
It is not the intention of this article to make everyone feel
uncomfortable and guilty. Discriminatory views towards disabled people
are so culturally embedded that they are unavoidable. Professionals
should not feel guilty about discovering that they harbour
discriminatory views, but they should do everything within their power
to try to change their perspective and actions.
The English language not only enshrines discriminatory attitudes
but also reinforces them so that negative views are shaped unwittingly.
The word 'invalid' comes from 'in-valid',
handicapped is linked to the pitiful disabled person begging with
'cap in hand' and there are numerous examples where the
disability aspect of common phrases is taken for granted: a lame excuse,
blindingly obvious, a dumb idea, a mad scheme, a 'no-brainer',
falling on deaf ears. But we should not all suddenly be silenced for
fear of getting it wrong; we will probably never get it right.
Sensitivities move on and what is regarded as acceptable changes over
time. The Curtis Report of 1946 (which led directly to the Children Act
1948), describes a 'mongol idiot of gross appearance' and a
'three-year-old hydrocephalic idiot of very unsightly type'
(Curtis Report, 1946, paragraph 40). Even the Children Act 1989 uses the
term 'dumb' to refer to children without speech (Part III,
section 17). When the BBC website Ouch! (BBC, 2003) ran a survey to find
out which words disabled people found the most offensive, the top ten
results were:
1. spastic (the most offensive)
2. retard
3. brave
4. special
5. cripple
6. handicapped
7. wheelchair-bound
8. mong
9. psycho
10. window-licker.
It is significant that 'special' was voted the fourth
most offensive word. This highlights the wish of disabled people to be
seen as simply part of the mainstream. Another legitimate objection is
to the use of de-personalised language such as 'the disabled',
'a Down's', 'an epileptic', 'an
asthmatic'.
Discriminatory attitudes are taken for granted and go largely
unnoticed. Middleton (1992) has compiled a roll-call of popular
literature which tells of bad, twisted people and good, beautiful
people. Her 'heroes' are Galahad (the perfect, very
able-bodied knight), Superman, an alpha-male until he puts on his
glasses (when he immediately becomes an ordinary wimp), Star Wars'
Luke Skywalker who is brave and handsome, and one might add James Bond,
the alpha male of them all, and so on.
Middleton's villains are Long John Silver and Captain Hook
(who both had missing limbs), the Cyclops with one central eye, the Ugly
Sisters, Fagin, Dr Jekyll (as opposed to Mr Hyde), witches and
hobgoblins--all with physical deformities to match their evil ways.
Richard III comes off particularly badly: the more it suited the
political purposes of those around him, the more apparently deformed he
became, to the point where his portraits were retouched to make him
'hunchback'.
Even great art perpetuates the mythology of disabled people as a
dark force or pitiable creatures deserving charity. John Everett
Millais's 1856 painting The Blind Girl (www.bmagic.
org.uk/objects/1892P3) shows the young person wandering with her little
sister, earning a living by playing the concertina and by begging. The
note pinned to her shawl, 'Pity the Blind', is an appeal to
passers-by to donate money. A group of disabled artists have written a
commentary for the Birmingham City Art Gallery which points out that:
* This is an idealised image of visual impairment, intended to
inspire pity. The blind girl appears angelic and long suffering.
* She is clearly poor--one of the 'deserving' poor--whom
it was people's Christian duty to help.
* She is dependent upon her young helper, as with younger siblings
of disabled children today.
* The double rainbows in the distance symbolise all that she cannot
see but she experiences the countryside through her other senses (she is
patiently fingering the grass). That blind people have heightened senses
is another stereotype.
* The image also shows the stereotypical belief that all blind
people are musical.
The disabled artists conclude: 'We feel that people often
still do pity us, even if they pretend not to.'
The reason that Alison Lapper was such a sensation on the fourth
plinth in London's Trafalgar Square was because the strong,
dignified image of a profoundly disabled woman (naked and pregnant) was
a rare occurrence. Lapper herself said of Marc Quinn's sculpture:
I regard it as a modern tribute to femininity, disability and
motherhood ... The sculpture makes the ultimate statement about
disability--that it can be as beautiful and valid a form of being as any
other. (Lewis, 2005)
Attitudes towards disability are deeply embedded social phenomena
that vary across place and time, and mainstream Western views may be
regarded as unusual in other societies. Oliver analyses a range of
perspectives regarding disabled people:
... in some societies, someone with polio may be seen as the victim
of witchcraft, and someone with epilepsy as possessed by God or the
devil ... Disability is not always defined as a personal tragedy with
negative consequences; it may be seen as a sign of being chosen, as
being possessed by a god, and ... the person may have their status
enhanced. (1990, pp 22-23)
Other societies, at other times, rely not on beliefs or magic to
explain the world but on science and rationalism. In these cultures it
is more likely that medical explanations will be prominent, with the
emphasis on seeking cures to ameliorate the impact of an essentially
negative condition. For example, the Peto Institute for Conductive
Education in Budapest teaches children with motor disorders to improve
their capacity to walk. This is a lengthy, intensive and challenging
process. Proponents feel the gains massively outweigh the discomfort and
other sacrifices, but opponents ask 'At what cost?', fearing
that the emphasis on 'putting things right' reinforces the
view that intrinsically the children are second best--a disappointment
and a burden to their parents.
The social model of disability counters this medical perspective:
... some of the greatest restrictions and limitations experienced
by disabled children and adults are undoubtedly created by the way that
society is organised to exclude them, by other people's damaging
attitudes, by limited and unequal opportunities and by inadequate
service provision. (Read et al, 2006, p 32)
It is therefore not simply the impairment itself which can cause
difficulties. If every child learned British Sign Language at school
instead of French, deaf people would have to confront fewer barriers to
communication: they would be en-abled, not dis-abled. This confirms
'disability' as a social construct.
Attitudes to disability have also varied not just between modern
cultures but across millennia. To go back to prehistory: in a
hunter-gatherer, nomadic society where life was 'nasty, brutish and
short', to be disabled probably caused life-threatening problems
for the individual and for the tribe. People with restricted mobility
would have found it hard to escape from a sabre-toothed tiger or catch
their reindeer supper; those with learning difficulties might not have
been able to remember or learn the most effective hunting methods.
Disabled people would have been a burden to the community.
With the transition from hunter-gatherer tribes to rooted
agricultural settlements, things may have been different. Gentle
gardening or milking a goat are manageable activities for many people
with a wide range of abilities and disabilities. In this kind of economy
surely the attitude to impairment would have been more inclusive?
In more modern times, the discrimination ubiquitous in the
capitalist West may be based on the negative view of people who are seen
as economically unproductive. Before the Industrial Revolution, at a
time when work was largely rural or located in small-scale workshops,
disabled people could make some contribution. There were fewer hazards
for the vulnerable in familiar, uncongested surroundings where, even for
those with learning difficulties, skills could be acquired at a slower
pace through observation and repetition, and individual inabilities
could be absorbed into the co-operative effort.
It is not that disabled people would have fared universally well in
this apparent rural idyll (was the 'village idiot' ridiculed
or valued or protected?), but once the Industrial Revolution got under
way and production moved to cities and fast-moving work in factories,
fewer disabled people would have found acceptance in the workplace and
would therefore have become further marginalised. Whether
post-industrial, technological societies will once again provide more
opportunities for disabled people to join the workforce remains an open
question.
Back in the 19th century, without the safety-net of the welfare
state, these new social pressures were devastating for anyone unable to
work. The Poor Laws of 1834 led to the provision of asylums to house the
'mad' or 'feebleminded', and the building of
workhouses and special schools where disabled people could be segregated
according to 'type'. These institutions were places both of
benevolent refuge and social invisibility. People who were different
were quite literally 'out of sight, out of mind', arguably a
feature of some residential settings and special schools even now. The
19th-century institutions also served a more sinister purpose. The
Mental Deficiency Act of 1913 renamed them 'colonies', the
purpose of which was to separate their residents from mainstream
society. There was no doubt about who was being protected:
Let us assume that we could separate all the families containing
mental defectives ... this would include a higher proportion of insane
persons, epileptics, paupers, criminals, habitual slum dwellers ... If
we are to prevent the racial disaster of mental deficiency ... we must
deal with ... the whole sub normal group. (Wood Committee, 1929)
The fear that 'mental defectives' (among others) might
infect the wider population and cause society to degenerate became
widespread and led in turn to the Eugenics movement. The ultimate aim of
this group, spearheaded by Sir Francis Galton (interestingly, and
perhaps not surprisingly, a cousin of Charles Darwin), was no less than
to breed out problems and thereby improve the human gene pool. The
Eugenicists' advocacy of genetic counselling, laws to restrict
'breeding' to the intelligent and physically fit, pre-natal
screening, enforced sterilisation and pre-emptive abortions were all
seen as stepping stones towards the creation of a perfect race. The
ancient Greeks had a similar aim, killing deaf children, and, in the
case of the Spartans, throwing those with impairments into pits.
The 19th and first half of the 20th centuries therefore saw
disabled people separated not only from mainstream society, but also
grouped into institutions that focused upon a particular impairment. The
paternalistic charities, which were expanding at the time, thus found it
easier to take up the cause of separate groups of disabled people. They
founded organisations such as the Royal National Institute of Blind
People (1868), the Royal National Institute for Deaf People (1911),
Mencap (1946--formerly the National Society for Mentally Handicapped
Children); and Scope (1952--until 1994, the Spastics Society).
Charities also aimed to generate funds by using promotional images
which played on the theme of pity: the sad little Mencap boy; the
lonely, shadowy child separated from his family, and the image of a
single piece of jigsaw (both Autistic Society). In the beginning, the
charities' philosophy was to do good things to the disabled and the
deserving poor, relegating them to an underclass who were denied the
means to manage their own lives, but were required to be eternally
grateful for being rescued.
Though many charities are now inclusive in their approach, with
disabled people playing a full part in the management of the
organisation, the Disabled People's Movement opposes the whole
notion of charity and promotes a rights-based approach. Michael Oliver
writes trenchantly:
In many so-called less civilised societies, disabled people are at
least accorded the dignity of begging on their own behalf. (1990, p 93)
The latter half of the 20th century saw the foundation of the
welfare state, which arose from initiatives in post-war reconstruction
and was responsible for momentous social change. At the time of its
conception, national governments could, by and large, control their own
economy and provide employment for men and protection for women and
children. But 21st-century governments, inexorably linked to world
economics and global events, can no longer do this. In the UK, rather
than providing the traditional safety net for the most vulnerable, the
Government now argues that the most efficient way to provide welfare is
to support all people into paid work and, through early years education
and programmes like Sure Start, to create what is trumpeted as 'the
workforce of the future'. Speaking in September 2008 about the new
'Access to Work' initiative, the Secretary of State for Work
and Pensions, James Purnell, said:
There has been a revolution in the rights, expectations and demands
of disabled people, which means the attitudes of others must change.
Disabled people must have the same opportunities and same right to work
as all people. (2008)
As only about half of adult disabled people are in work (compared
with 80% of non-disabled people), this seems a laudable objective.
However, its message could be that the individual should be productive
at all costs, with obvious implications for those unable to join the
labour force.
We are also witnessing the dual rise of consumerism and celebrity
where physical beauty has inordinately high status. People who differ
are urged to aspire to become more 'normal' or more beautiful.
There is even reported to be an alarming rise in the number of cosmetic
procedures performed on adolescents. The sheer banality of this
perspective is revealed by Oliver's description of an isolated
tribe in West Africa where many of the population were born with only
two toes:
This made no difference to those with only two toes or indeed the
rest of the population. Such differences would be regarded as
pathological in our society, and the people so afflicted subjected to
medical intervention. (1990, p 14)
Suddenly this turns any perception of 'normal' on its
head, but it also raises problematic moral issues for any society which
seeks to perpetuate a narrow definition of normality.
Both the Abortion Act 1967 and the Human Fertilisation and
Embryology Act 2008 talk of 'screening out'
'abnormal' embryos which appear to have conditions that will
lead to serious disability. Bob Edwards, who led the team behind
Britain's first test-tube baby, is reported in 1999 as saying:
Parents will soon have a moral duty to abort pregnancies when a
severe disability is detected ... We are entering a world where we have
to consider the quality of our children. (Metro, 5 July 1999)
However, another commentator, Dr Mark Hamilton of the British
Fertility Society, reviewing recent developments in gene-mapping, takes
the view that 'If you can screen for anything, where do you draw
the line?' (news.bbc.co.uk/1/ hi/health/7688299.stm). Any movement
that endorses the creation of 'the perfect child' raises very
complex moral issues and ultimately diminishes the value of people
regarded as less than perfect, and belittles the contribution which
disabled people can make.
This extensive survey of underlying socio-historical factors shows
that attitudes towards disability are deep-rooted, widespread and
culturally specific. They will inevitably determine the extent to which
the environment is shaped to meet the needs of disabled people, whether
they are included and valued or made invisible, and to what degree
impairment is individualised and problematised.
Particular attention is drawn to the work of Michael Oliver, whose
book, The Politics of Disablement (1990), is the inspiration for many of
the avenues explored here.
Disabled children
This review of cultural attitudes to disability now leads to a
consideration of services for disabled children who need new families.
It is not an auspicious start. Children have been valued and treated
differently in different cultures and at different times. Compare, for
example, the way children are welcomed in Spanish restaurants or at
Asian celebrations, while other communities show only grudging
tolerance. Children across the world have been variously regarded as
innocent, or deliberately mischievous; needing harsh or lenient
discipline; part of the workforce or encouraged to learn through freedom
and play. And patterns are constantly changing. Ehrenreich and English
compare childhoods in the US today with those of the colonial period
(1600-1775):
Today, a four year-old who can tie his or her shoes is impressive.
In colonial times, four-year-old girls knitted stockings and mittens and
could produce intricate embroidery: at age six they spun wool. (1979, pp
185-86)
Gender, too, has played its part as girls continue to be valued
differently from boys in various societies.
If disabled adults are at risk of being made invisible, disabled
children are doubly so--largely through stigma and institutionalisation.
This is dramatically true in parts of Central and Eastern Europe
(Browne, 2005). With the economic decline following the collapse of the
Communist system, the proportion of the region's children in
institutional care has increased, with disabled children particularly
vulnerable. Poverty, stigma, poor community support and a belief that
the state can care better than families have forced parents in crisis to
place their children in institutions as the first, 'best' and
only option. Often there is little hope of their ever leaving
institutional care. If they do stay at home, disabled children are
likely to miss education and to become socially isolated.
Nearer to home, disabled children are also scandalously invisible.
So much time has been spent arguing about definitions of disability that
serious and comprehensive data-collection has been abandoned. Of the
studies that do exist, some focus on apples, others on pears, thus
leaving comparative analysis open to misinterpretation. What does seem
certain, however, is that outcomes for disabled children across a range
of areas fall short of those for other children. Disabled children tend
to have:
* lower educational attainment;
* poorer access to health services;
* poorer health;
* poorer employment outcomes;
* more offending behaviour.
There is also an unequivocal link between child abuse and
disability: disabled children are much more likely to be abused, but
less likely to have their names placed on child protection registers.
Cook and Standen's study found that where there are concerns about
the well-being of a disabled child, there is 50 per cent less likelihood
of a case conference than if the child were not disabled (Cook and
Standen, 2002).
Even less is known about disabled children in public care, except
that they are over-represented in comparison with their not-disabled
peers, even if they mainly enter care for reasons unconnected to
disability. Of those children for whom disability is the principal
reason for becoming looked after, 20 per cent are on legal orders and 80
per cent are 'accommodated' under voluntary arrangements, with
the more profoundly disabled children in the latter category. Voluntary
agreements between agencies and parents, whatever their other merits,
can confound the search for a family placement. Although the Children
Act 1989 usefully defines disabled children as 'children in
need', its emphasis that they are 'children first' has
resulted in a view that disabled children should be treated like all
other children. Unfortunately, this has the unintended effect of
discounting the additional needs of many disabled children, so
reinforcing their invisibility.
The research report Surveying Adoption (Ivaldi, 2000) provides an
insight into adopted disabled children. Ivaldi found that of children
who had been adopted, 40 per cent had some degree of disability. Later
studies have found that 11 per cent of all children awaiting a
'permanent' placement were disabled, and that between four per
cent and seven per cent of children placed for adoption and 11 per cent
of children placed for long-term fostering had a 'significant
disability' (Rushton and Dance, 2002, p 69; Simon and Dance, 2006,
p 1). It therefore seems more likely that a significantly disabled child
will find permanence through fostering rather than adoption, a factor
which is reflected neither in children's profiles nor in individual
planning.
Recent research by Mooney et al (2008) notes the continuing dearth
of comprehensive data about disabled children. As a minimum, the
following information is required if agencies are to plan services and
offer a genuinely inclusive service to disabled children:
* the number and profile of disabled children in care, whatever
their 'primary need' code;
* their legal status;
* their living arrangements;
* the extent to which disabled children are referred to
family-finding teams;
* the pathways to permanence which disabled children take;
* how long disabled children wait for a placement;
* the degree to which disabled children's legal status has an
impact on family-finding.
If disabled children are largely indescribable to researchers, they
are also invisible in the childcare research literature. The titles of
the few studies of disabled children tell their own story:
* Gone Missing
* Still Missing
* Don't Leave Us Out
* Seen but not Heard
* The Silent Minority
* On the Edge
* Valued or Forgotten?
* Left Out of the Picture.
Moreover, disabled children do not feature even in the index of
most social work publications and rarely in the bibliography. Disabled
children are both subsumed under the general child population (and their
needs are therefore not identified), or they are regarded as somehow
separate from other children and again at risk of being overlooked. Even
staff on children's disability teams tend to work more with the
family than with the child her/himself.
Invisible people have no voice. When care is taken to listen,
children recount a compelling narrative (Robinson and Stalker, 1998, p
145):
I am excluded from so much and I am so lonely and have few friends.
(20-year old)
The biggest barrier is that I'm not allowed to go out on my
own or with my friends. There is always an adult with us. (16-year-old)
The campaign Every Disabled Child Matters talked to disabled
children and young people and found that the three things they wanted to
change most were:
* to have more fun things to do;
* to change negative attitudes to disability;
* to make it everyone's right to get a good education.
In everyday situations, people's inability to connect with
those who have communication difficulties makes life very hard. Imagine
how much worse it is for disabled children in care when life-changing
decisions are being made on your behalf without even an attempt to
understand your views:
In only 12 out of 66 cases presented to the [Resources] Panel had
the social worker attempted to find out the child's views. In at
least five cases, the social worker had not even seen the child.
Typically, the section of the form headed 'Child's view'
was left blank or the social worker made comments such as 'She is
unable to communicate and therefore her view is not available.'
(Joseph Rowntree Foundation, 1998)
Despite the United Nations Convention on the Rights of the Child,
which came into force in the UK in January 1992, a recent report
(Committee on the Rights of the Child, 2008) cites a number of areas
where disabled children still lack fulfilment of their most basic
rights. Among these are the right to express views, the right to access
health services and the right to play and leisure.
The tide may be turning a little with new legislation and
resources: a recent government initiative, Aiming High for Disabled
Children: Better support for families, provides a properly resourced
long-term plan for disabled children to the tune of 430 million [pounds
sterling] new money. This is good news. However, there is some way to go
if disabled children are to be a full part of the Every Child Matters
agenda. The Council for Disabled Children's campaign Every Disabled
Child Matters must be congratulated for keeping up the pressure.
Innovations
In its Strategy for 2008-2011, Lives Changed for Good, the British
Association for Adoption and Fostering (BAAF) has committed itself to
campaigning around the unacceptable delays experienced by children with
disabilities who enter the care system. One of its projects, the Opening
Doors Disability Project, has sought to understand why disabled children
wait a long time for a permanent new family and to develop more
effective ways for agencies to make placements, thereby opening the
doors of family placement to disabled children. The project has tried to
promote an inclusive approach that sees the disabled child as an
individual child who has some specific needs--thus removing the taboo of
disability.
It had become very clear that the process of family-finding exposed
disabled children to particularly pernicious forms of discrimination.
Adoption and fostering is an area of work where families are being
artificially constructed and where choices are being made about the
intrinsic value of human beings. It seemed that attitudes to disability
in this area of social work were exceptionally problematic.
Research by Ivaldi (2000) found that prospective families are less
likely to want disabled children. It showed that, whereas 69 per cent
and 83 per cent of prospective adopters declared they would take a child
who had been sexually abused and physically abused respectively, only 13
per cent and 21 per cent would consider children with mental or physical
disabilities. It was fairly clear that the old prejudices and
misunderstandings are still operating.
Another problem is that linking the waiting children with approved
adults relies on a potentially crude system where staff match a
'category' of child (based on age, background, disability,
etc) with a 'category' of potential parent who, as in
Ivaldi's research, express a hypothetical view about the kind of
child they believe they can care for. With disabled children, the
sub-text is frequently, 'We don't want one of those.'
Thus potential links are being ruled out, based on stereotypes, before
any individual child can be brought into the frame. The irony is that
one prospective family would never be required to take on disability as
a whole, or even the whole range of any particular condition. Yet
somehow each individual disabled child is being swept aside in generic
descriptions.
The Opening Doors project has argued that the best way for a child
to find a family (especially a disabled child) is if families themselves
see and respond to actual children: professionals should just let the
magic happen. Therefore, adopters' approval should not be
restricted. The Practice Guidance to the Adoption and Children Act 2002
(Department for Education and Skills, 2006) reinforces this view: in
essence, adopters should be allowed to be open to any child.
Thus, more links may be achieved if there are direct ways for
prospective carers to learn about individual children--by responding to
excellently written profiles, seeing photographs and videos, and even
meeting children. Encouraging that first spark of recognition and
helping families to find a way round the stereotypes and to connect with
a real child could provide an answer.
To this end, much of the Opening Doors project work has focused on
exploring and promoting these direct methods. One result has been the
establishment of SeeMe Films, a family-finding service that uses video
as an effective way of conveying a rounded picture of a child. Using
film, disability can be presented as a part of a child and not as the
whole story. For some children, this may be the only way they will find
a family.
Other initiatives have included countrywide promotion and training
on the development of video profiling events, where a small film of each
waiting child is shown in a cinema-style presentation to an invited
audience of prospective adopters and carers. The results are
encouraging. This model is currently being extended by testing the use
of 'placement parties' where prospective families actually
join in activities with a group of 'children who wait', and
where, again, magic might happen. The project is also exploring the
extension of In My Shoes, the computer-assisted interview through which
children, including those with limited communication skills, can be
helped to express their wishes and feelings. All these initiatives can
be viewed on the website: www.openingdoors.baaf.org.uk. Many agencies
are enthusiastically and successfully embracing these ideas.
What next?
There are inevitably continuing frustrations in the quest to get
more disabled children permanently placed if they cannot return to their
family. Five issues in particular are worthy of more attention:
1. Inclusion in permanence planning
There is anecdotal evidence that the planning trajectory for
disabled children may be different from the pathways of not-disabled
children. Faced with the disheartening supposition that a suitable
family might not be found, social workers may not be actively pursuing
permanence for some disabled children. The Independent Reviewing
Officer's role is crucial here and it is suggested that they might
explore this issue in their area.
2. Institutional care
There should be ongoing concern for those disabled children growing
up in institutions (such as boarding schools) whose contact with home is
so attenuated that they have lost all sense of family life. These
children have for too long been outside the safeguards of the Review
system and although new legislation is beginning to address this,
continuing vigilance on their behalf is essential (see Burns, 2009, pp
9-11). All professionals who come into contact with an institutionalised
child should ask themselves these two important questions:
* Does this child have a sense of home and family?
* Who is monitoring this child's longterm needs?
If either answer is unsatisfactory, action should be taken.
3. National Adoption Register
While the Adoption Register's achievement in linking black and
minority ethnic children, sibling groups and older children should be
celebrated, it has not yet made a big enough impact on the numbers of
disabled 'children who wait'. This is unlikely to happen until
the Department for Children, Schools and Families (DCSF) is persuaded to
modify the Register's contract to accommodate permanent fostering.
Many adoptions of disabled children are the result of relationships that
began as permanent fostering--but the link has to start somewhere.
4. Developmental delay
One of the major barriers preventing children from having families
is the increasing incidence (in part because of maternal substance
misuse) of developmental uncertainty and developmental delay. Very young
children who are thus described seem to fall somewhere between the small
number of adults who definitely want to care for a disabled child and
the vast majority who will not take the risk. The label seems to blight
these children until they are either old enough to catch up or until
there is a definite diagnosis. By this time, because they are so much
older, no one wants them anyway. More understanding of these vague terms
is needed, along with more nuanced descriptions of the implications for
each child. Advice from paediatrician colleagues is necessary to take
this further.
5. Disabled applicants
Despite the fact that there is a need for more people to come
forward for all children, disabled applicants are treated woefully
badly. Even if they are approved, they are then avoided by social
workers seeking a match. Although hidden behind a smokescreen of
supposedly legitimate excuses, the reasons for discounting disabled
people as parents for children needing families are often based on pure
prejudice. Some suggestions about what might be useful for disabled
applicants in their quest to be matched can be found on the website:
www.openingdoors.baaf.org.uk.
Conclusion
One of the main aims of BAAF is to ensure that children grow up in
families. Until the mid-1970s disabled children were rarely placed in
foster care and hardly ever considered for adoption. Argent writes:
When babies with even a slight impairment were relinquished by
their birth mothers, 'unfit for adoption' was stamped on their
files. (1996, p 1)
This now seems unthinkable. Despite current shortcomings, practice
has come a long way since those early days of family placement, and
achievements should be celebrated.
But there is still some way to go. The more marginalised the child,
the greater the professional responsibility. It is not acceptable for
already disadvantaged children to stay in temporary care or in
institutions, however devoted particular carers may be. Prejudices must
be confronted, new ideas embraced and risks taken in pushing forward the
boundaries of family-finding. As the North American pioneers of adoption
parties have said, 'Children stand to be hurt as much by the risks
we don't take as the risks we do.'
Most importantly, the taboo which blights the life-chances of so
many vulnerable children must be lifted. These children must be brought
into the mainstream. No one who works in the field of child care or
children's services must continue to think that disabled children
are someone else's concern. We are all responsible.
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Jennifer Cousins is Consultant, Opening Doors Disability Project,
BAAF