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By
FRIMET ROTH
Frimet Roth's
article below was published by the Jerusalem Post on 29th June 2006. It was written in response to a
prominent cover-story by Ruth Eglash in the Post's UPFRONT section about the
new 25-acre
Aleh Negev
residential village.
 Behind the spin and hoopla, the celebrities and the gala
fund-raisers, lies the truth about
Aleh Negev. This behemoth institution is setting back the status
of Israel's disabled citizens by decades.
Aleh’s promoters made this project
irresistible to the government of Israel, snaring 46.5 million
taxpayers’ shekels and 100 dunams of public land. The bait included
generating 500 jobs to boost the ailing Negev economy; establishing
lucrative on-site businesses including a coffee company; a
for-profit paramedical therapies center; and opportunities for local
high school students to earn matriculation points by volunteering.
Aleh's public relations people refer to it euphemistically as a
"state-of-the-art" hospital equipped with dormitories, an
all-encompassing "village", a hospice. They studiously avoid the
accurate name: institution.
Many will have forgotten what the
Israeli Supreme Court declared in 1996:
"The disabled person enjoys equal
rights. He does not exist outside society or on its
periphery. He is a regular member of the society in which he
lives. The goal of arrangements is not to improve his lot in
isolation, but rather to integrate him … in the regular
fabric of society."
Two years after that landmark
determination, the Knesset enacted the Equal Rights for Disabled
Persons Law with this goal:
"To protect the dignity and
independence of the disabled person with disabilities and to
anchor his right to participate equally and actively in
society in every area of life…"
Nonetheless, thousands of Israel's
disabled remain mired today in enormous institutions, isolated from
the community.
By the sixties, studies had shown that
the disabled progress faster and better, maximizing their potential,
in small rather than large settings. The Western world reacted to
these findings by shuttering its institutions for the disabled,
transferring them to small settings and legislating in favor of this
new policy.
It has sought to enable all citizens
with disabilities, even those profoundly affected, to live with
their families or in small community residences, enjoying as
normative a lifestyle as possible.
As the mother of a blind and profoundly
disabled 11-year old daughter, I know that even such children
appreciate their family's loving presence. The way this is expressed
may be hard to discern. But search and you will find it: a soft
utterance, a sigh, a near-smile, the movement of a finger.
In truth, it should not be necessary to
debate whether the disabled enjoy community-based living. Do we
require such evidence from other segments of the population?
Institutions also fail when assessed in
dollars and cents terms. There is compelling evidence that they cost
far more than any other option.
An impressive article critiquing the
then-proposed Aleh Negev project was published in 2003 by
Sylvia Tessler-Lozowick from Bizchut, the Center for the Civil
Rights of Persons with Disabilities. Writing in Panim, the
journal of the Teacher's Union, she elucidated the project’s errors
at a point when Israel had already granted the land and pledged some
40 million shekels to Aleh Negev but before construction had
started.
Entitled "Prison of Gold", the article points out that Israel's
progressive court decision and laws are rendered impotent by
government bodies. The Department of Care for the Mentally Retarded,
in particular, generally offers the families of disabled adults no
option other than institutional living. Parents remain unaware that
their children are legally entitled to small- residential living
arrangements within the community.
In my experience, professionals, including neurologists, frequently
urge parents to institutionalize severely-affected children and
babies. Moreover, precious little assistance is forthcoming from the
government in the form of paramedical therapies, equipment or
respite care for parents whose disabled children live at home.
Even the minimal government aid
available can entail daunting bureaucratic challenges. Unavoidably,
parents expend their physical and emotional reserves on day-to-day
living, often becoming financially-impaired and depressed.
Eventually, seeing no alternative, some reluctantly institutionalize
their children.
Bizchut has campaigned for years against Israel's
pro-institutionalization policies, encountering resistance at every
turn. Tessler-Lozowick says that when she lobbies politicians and
professionals, they ask her why Bizchut hasn't aroused widespread
parental support.
But this is unfair. Emasculated by an unsympathetic system, even the
most idealistic of parents cannot be burdened with spearheading
protests. The demand for change must come from the general public,
from citizens who abhor prejudice and discrimination.
Huge institutions only entrench the current widespread indifference
to, or revulsion from, severely disabled people. Isolating them from
the non-disabled in self-contained "villages" is not the answer.
Concern solely for their therapeutic needs is not the answer. Pity
is not the answer. People with disabilities are more than just
the sum total of their pathologies.
It is equally unfair to expect the public to be radically
transformed overnight. The antiquated myths about the disabled which
originally underpinned institutionalization are still with us.
Progress requires that we integrate the disabled into our
neighborhood. Their visibility on our streets, in the local
makolet, riding Egged buses will crumble the walls of myth and
prejudice.
This is a process that I have witnessed in my own community.
Residents of Ramot in Jerusalem evolved
from opponents of the construction in their midst of Keren Or, a
school for the blind and multiply-handicapped, into an embracing
neighbor.
Volunteers, employees and financial
supporters of the school have materialized from Ramot’s ranks. And
with the adult students housed in many scattered apartments, the
entire neighborhood is now exposed to a sector that was once out of
sight and mind.
Change demands a re-vamping of government funding:
-
Greater financial
and respite support for parents raising their children at home.
-
Establishing
additional small, in-community residences for children whose
families are unable to care for them or for whom adoptive or
foster families are unavailable.
-
Ditto for adults
with disabilities. Akim-Jerusalem, serving persons with
developmental disorders, operates 3 hostels and 15 apartments
and group homes for a total of 160 residents. All are situated
in residential areas and are models for replication.
-
Close those large
institutions, starting with Aleh-Jerusalem’s much- touted
facility for infants only a few months old. Research into
institutionalized normal babies found that multiple care-givers
and the absence of secure attachments resulted in delayed
milestones. Babies already struggling with developmental
disabilities are affected even worse.
By ignoring the knowledge that advanced
societies have amassed about disabilities, Israel is cheating its
own disabled and their families. We must right this tragic wrong.
---
A high-resolution scan of the
original published version of this Jerusalem Post article is
here.
Jul. 5, 2006 23:12 | Updated
Jul. 5, 2006 23:33
In praise of Aleh
Sir, - While I laud Frimet
Roth's views on integrating disabled children into society
("Institutionalization - even in a 'village' - isn't the
answer," June 29), I feel I must correct her on a few
points. It appears that in labeling Aleh as an institution,
she is admitting that she has never set foot within its
doors.
As a mother of a profoundly
handicapped boy who has resided in Aleh for half a decade, I
can tell you that "institution" would be the last word I
would use to describe the place. The love and care the
children receive goes above and beyond that which many of
the parents are able to provide with their limited physical,
emotional and financial resources.
Yes, in an ideal world babies
need the love of one caregiver for their optimum
development; but what if the only "progress" that baby is
capable of is to be able to swallow his own food? Would it
not be preferable for that baby to be under the 24-hour
watchful eye of an on-site doctor or nurse in case he needs
emergency medical attention?
My son was in the emergency room
enough times for me to see that home care was not a valid
option. But these babies are loved, and they are loved and
cared for by people whose job it is to take care of their
needs and who are not pulled in multiple directions as are
most parents of healthy children.
Perhaps the next time Roth
launches an attack on an organization such as Aleh (which
was founded by a father of a handicapped child who simply
wanted his child as well as others cared for according to
their needs), she should take a look inside. Yes,
institutions should not exist, but Aleh should, as a sad but
valued necessity to parents like me, who want the best for
their handicapped children.
ELLA SELTZER
Ramat Beit Shemesh
Sir, - Frimet Roth cannot
generalize when it comes to handicapped children. All
disabled children are not born equal; there are those who
can function to a lesser or more degree and there are those
who cannot function at all without professional help.
To advocate the closing of Aleh is neither realistic nor
practical. Aleh's children are, for the most part, severely
brain damaged and as much as we would like to have these
children in a community setting, it would be virtually
impossible.
DOROTHY SMITH
Beit Shemesh
Jul. 9, 2006 23:31 | Updated Jul. 10, 2006 8:31
Sir, - Frimet
Roth is a powerful advocate for retaining the handicapped
within family and community, but her one-sided approach paid
scant attention to factors requiring the specialist
institution, which is sometimes, by necessity, situated far
from family and community ("Institutionalization - even in a
'village' - isn't the answer," June 29).
Aging parents is possibly the
most common factor driving the need for a caring, sheltered
environment other than the patient's home. Parents in their
30s and 40s need to face the very few choices open to them
as they and their special child grow older.
Ms. Roth also has little to say
about the range of handicaps, the most severe of which need
access to specialist skills and equipment not to be found in
the home.
The dream of "mainstreaming" all
sufferers will necessarily not apply to the whole spectrum
of the handicapped, their disabilities, their needs and
their families' resources. Israel does provide for this
range of complex caring requirements, and Aleh Negev is one
example of the approach of an enlightened and caring
society.
JOY CHESTERMAN
Jerusalem
...why I
stand by what I
wrote
Sir, - Reader Ella Seltzer ("In
praise of Aleh," Letters, July 6) presumed that my referring
to Aleh as an institution, which any dictionary will confirm
it is, proves I never set foot in it. In fact I have visited
twice and spoken to parents whose children live there. My
impressions from both remained vivid and disturbing while I
wrote my article about the institutionalization of people
with disabilities. Nevertheless, I did not accuse the
founders, promoters or beneficiaries of the services of Aleh
institutions of any malice or ill-will.
What I pointed out was that the
rest of the Western world, and parts of Israel, realized
decades ago that home-care or, where that is impractical or
unavailable, small, community-based facilities are the best
solutions for all people with disabilities. Even those
affected severely, for whom reader Dorothy Smith expressed
concern in the same letters column, can be cared for in such
settings. My own daughter and her schoolmates are deemed
"profoundly" disabled, even worse than severe, so I speak
from experience.
Any facility, even one offering
hospital care, can be situated within the community and need
not be isolated from the rest of society.
I realize that much of the above
is still unknown to many of the devoted, concerned and
well-intentioned individuals who support and promote Aleh,
which is precisely why I felt compelled to write what I did.
FRIMET ROTH
Jerusalem
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