Memorandum from The National Aids Trust
(DDB 24)
1. SUMMARY
1.1. The National AIDS Trust (NAT) does
not think that the Draft Disability Discrimination Bill responds
adequately to the existing gaps and flaws of the DDA 1995.
1.2. NAT is particularly concerned with
the proposed definition of disability in the draft Bill.
— The definition fails to acknowledge
the broader social dimension and complexity of HIV-related discrimination.
HIV-related discrimination not only affects people living with
HIV, but it also extends to people suspected of living with the
virus (because of the history and nature of the epidemic which
affects predominantly certain population groups), and those with
whom HIV is associated in the public mind. Population groups commonly
associated with HIV include gay men, sex workers, injecting drug
users, Black Africans, prisoners, family members, carers, and
professionals working in the field of HIV.
— The definition also disregards the
fact that HIV-related discrimination exacerbates existing prejudice
and discrimination, in particular racism and homophobia.
— Finally, it is argued that a broader
definition of disability is required by the EU Framework Employment
Directive.
1.3. To be effective, disability discrimination
law needs to adopt a medical and social model of disability which
covers people with impairments or functional limitations, but
also people who are perceived to have or are associated with impairments
or functional limitations.
The draft Bill should prohibit, in addition
to discrimination on grounds of HIV from the moment of diagnosis:
— Discrimination on grounds of perceived/imputed
disability;
— Discrimination on the basis of association
(including carers)
1.4. NAT also has other specific recommendations
about employment exemptions, the enforcement process and available
remedies.
2. INTRODUCTION
2.1. The National AIDS Trust (NAT) is the
UK's leading HIV and AIDS policy development and advocacy organisation.
NAT works in the UK and internationally for policies that will
prevent HIV transmission, improve access to treatment, challenge
HIV stigma and discrimination and secure the political leadership
to effectively fight AIDS.
2.2. NAT has been involved in the debates
surrounding equality law reform for more than a year, campaigning
in particular for changes to the Disability Discrimination Act
1995 (DDA 1995).
2.3. NAT welcomes the publication of a Draft
Disability Discrimination Bill and the opportunity to make comments
and recommendations on the content of this draft Bill to this
Committee.
3. HIV EPIDEMIOLOGY
IN THE
UK
3.1. There are more people living with HIV
in the UK than ever before, with approximately 50,000 people infected
with the virus, a third of whom remain undiagnosed. The number
of people living with HIV is still increasing due to the combined
effect of decreasing deaths as a result of HIV treatments and
increasing cases of newly acquired HIV.
3.2. The estimated prevalence of diagnosed
HIV infections increased between 2001 and 2002 by 20% to 34,300,
and undiagnosed HIV infections by 17% to 15,200. The latest figures
released by the HPA show that 5,047 new HIV diagnoses have been
reported so far for 2003 compared to 4,204 at the same time last
year. This represents an increase of 20% on 2002. When all reports
have been received, the total figure for new HIV diagnoses in
the UK in 2003 is expected to be over 7,000.
3.3. The two largest groups infected with
HIV are men who have sex with men and heterosexuals.
3.4. Since 1999, the number of new HIV heterosexual
infections has exceeded the number of new diagnoses of homo/bisexual
men, but new HIV diagnoses in gay men are expected to reach a
record of 2,000 in 2003. So far 1,414 gay men have been diagnosed
with HIV in 2003. This represents an increase on 1,195 this time
last year.
3.5. The number of heterosexual infections
has significantly increased. An overwhelming majority of heterosexual
HIV infections occurred in Africa (80% of heterosexually acquired
infections occurred abroad, with 71% of those infections occurring
in Africa).
3.6. Women are the fastest growing group
of newly diagnosed people, with a significant percentage of them
being from minority ethnic communities, mainly black Africans.
In 2000, 64% of the 1,203 women diagnosed HIV positive in the
UK were black African women.
3.7. As the number of people living with
HIV in the UK is increasing, discrimination continues to be a
major issue for people living with HIV and AIDS. In the UK, the
HIV epidemiology highlights the fact that HIV primarily affects
vulnerable and marginalised groups (ie gay men, Africans) who
very often already face stigma and discrimination.
3.8. The combination of HIV with another
or several factors such as race, gender and sexuality is likely
to lead to multiple discrimination or "HIV-related discrimination".
Members of marginalised groups who are living with HIV suffer
not only from the burden of having a potentially fatal disease
but also from the additional burden of being an oppressed group
in society.
3.9. The UK needs to have efficient and
adequate legislation to challenge HIV-related discrimination.
3.10. NAT does not think that the Draft
Disability Discrimination Bill responds adequately to the existing
gaps and flaws of the DDA 1995.
4. DEFINITION
OF DISABILITY
4.1. NAT welcomes the broadening of the
definition of disability to cover HIV-positive people from the
moment of diagnosis.
4.2. This was a significant gap of the statute.
This flawed definition of disability disregarded the fact that
being HIV-positive and asymptomatic may not diminish a person's
physical capacities but can nevertheless substantially limit that
person's ability to work or access goods and services as a result
of the prejudices and negative assumptions of others in relation
to HIV.
4.3. However, the draft Bill fails to acknowledge
the broader social dimension and complexity of HIV-related discrimination.
4.4. HIV-related discrimination not only
affects people living with HIV and AIDS, but it also extends to
people suspected of living with the virus (for example because
of the history and nature of the epidemic which tends to affect
predominantly certain population groups), as well as those with
whom HIV is associated in the public mind.
4.5. Population groups commonly associated
with HIV include gay men, sex workers, injecting drug users, Black
Africans, prisoners, family members, carers, and professionals
working in the field of HIV. The new Disability Discrimination
Bill needs to acknowledge that HIV-related discrimination has
both a medical and social dimension.
4.6. As noted in para. 3.8, multiple discrimination
is also a key element of HIV-related discrimination which tends
to exacerbate existing forms of marginalisation such as racism,
homophobia, and gender-based discrimination.
4.7. NAT would like to attract the Committee
Members' attention to the United Nations Joint Programme on HIV/AIDS
(UNAIDS) definition of HIV-related discrimination:
4.8. HIV-related discrimination is "[A]ny
measure entailing any arbitrary distinction among persons depending
on their confirmed or suspected HIV serostatus or status of health
(...) Discrimination against people living with HIV/AIDS also
extends to those with whom AIDS is associated in the public mind
(homosexuals, prostitutes, drug addicts, haemophiliacs, and family
members and associates of HIV-positive people)."(1996 Protocol
on HIV/AIDS related discrimination).
4.9. By prohibiting discrimination on grounds
of imputed/perceived HIV status and on the basis of association
(which ought to include carers), the draft Bill would provide
a comprehensive and adequate definition of HIV-related discrimination.
4.10. NAT also believes that the broadening
of the definition of disability under the DDA 1995 is required
by the EU Framework Employment Directive ("FED").
4.11. Although the FED does not provide
a definition disability, the EU Commission made clear that "the
old medical -centred approach is now giving way to a social one
which puts much stronger emphasis on identifying and removing
the various barriers to equal opportunities" for disabled
people (1996 Communication on "Equal Opportunities for Disabled
People", COM(96) 406 of 30 July 1996). Similarly in its 2003
Communication on "Towards a United Nations Legally Binding
Instruments to Promote and Protect the Rights and Dignity of Persons
with Disabilities" (COM (2003) 16 of 24 January 2003), the
Commission reiterates the importance of a social approach to disability.
4.12. By not defining disability, the FED
does not seem to exclude a social model of disability, as it does
not seem to exclude a medical model. In essence, the focus of
disability discrimination law should be the occurrence of disability
discrimination itself; such a law should not exclude victims of
discrimination through its definition of disability.
4.13. NAT also notes that the UK definition
of disability is more restrictive than the definition adopted
in other Member States. This may contravene the general principle
of uniform application of Community law throughout the EU and
its effectiveness, as well as the maintenance of equal conditions
for competition.
4.14. The UK may be exposed to questions
being referred to the European Court of Justice for a preliminary
ruling on the lawfulness of the UK definition of disability at
Community level.
4.15. To be effective disability discrimination
law needs to adopt a medical and social model of disability which
covers people with impairments or functional limitations, but
also people who are perceived to have or are associated with impairments
or functional limitations.
4.16. NAT recommends that the Bill prohibits,
in addition to discrimination on grounds of HIV from the moment
of diagnosis:
— Discrimination on grounds of perceived/imputed
disability.
— Discrimination on the basis of association
(including carers).
5. EMPLOYMENT
EXEMPTIONS
5.1. The draft Bill fails to remove some
exceptions untouched by the Disability Regulations 2003.
5.2. The Armed Forces exemption should be
removed. It is possible to serve in non-combatant jobs in the
Armed Forces. The situation of HIV-positive soldiers should be
examined on a case-by-case basis.
5.3. The Bill should also cover all examining
bodies, statutory office holders, political office holders, magistrates
and school governors.
5.4. The DDA 1995 does not contain any specific
provisions on medical examinations and screening. This means that
the link between privacy and discrimination is disregarded and
that employers are "free" to violate a job applicant/employee's
right to privacy without limitations.
5.5. The Bill should prohibit pre-employment
medical examinations or questions. Medical related questions should
only be permitted in very limited circumstances (ie when related
to the essential functions of a job).
5.6. The draft Bill also fails to fill in
the gap left by the Disability Regulations 2003 as regards the
scope of the duty to make reasonable adjustments which does not
cover actual dismissals and omissions to act
5.7. NAT also recommends that the draft
Bill introduces a provision which aims to prevent indirect discrimination
for all disabled people who could potentially be affected.
5.8. The Disability Regulations which will
come into force in October 2004 modify the duty to make reasonable
adjustments to introduce some elements of a definition of indirect
discrimination (ie the duty extends from one which applies to
"arrangements" to one applying to "any provision,
criterion or practice" and which places a disabled person
at a substantial disadvantage in comparison with persons who are
not disabled). However the rest of the definition remains the
same and is narrower than the Directive's definition. In particular,
the provision only applies to situations where a disadvantage
actually arises and leaves no scope for a claim relating to an
anticipated disadvantage.
6. ENFORCEMENT
PROCESS
6.1. NAT is also very concerned with the
fact that the draft Bill very much retains the individual-based
nature of the enforcement process under the DDA 1995.
6.2. The majority of HIV-related cases being
settled out of court, there is virtually no jurisprudence in relation
to this type of discrimination. This fact was highlighted at Session
2 of the All-Party Parliamentary sessions on AIDS: Law and discrimination
in February 2001. Paul Ward from the Terrence Higgins Trust noted:
6.3. "We know of no cases that have
come to court under the Disability Discrimination Act but we do
know a number of cases which have been settled out of court because
of the legislation, essentially because people themselves work
in terms under their own privacy and confidentiality."
6.4. Since then, there have been a very
few HIV discrimination cases taken to court, the majority of complaints
being settled out of court or withdrawn.
6.5. NAT would like the draft Bill to introduce
provisions allowing organisations and associations with a legitimate
interest in the rights of people with disabilities to act on behalf
of the complainant. This is one of the requirements of the FED
which has not been acknowledged in the Disability Regulations
2003.
6.6. The phenomenon of systemic discrimination
is also very much ignored in the present disability legislation.
The introduction of an equality duty on public authority is a
significant step towards a substantive approach of equality.
6.7. However, the enforcement process does
not currently tackle systemic discrimination.
6.8. NAT would like to attract the Committee
Members' attention to the Australian system of public inquiries
which gives the Australian Human Rights and Equality Commission
(HREOC) the power to conduct public inquiries as a means of investigating
complaints in appropriate cases.
6.9. Public inquiry is a process that should
be considered by the Committee Members to be introduced in the
draft Bill. The system of investigation would be open and public
and would involve receiving and making public submissions from
parties other than the complainant and the defendant.
6.10. The system of public inquiry provides
an opportunity to tackle systemic discrimination as well as promote
awareness and compliance with the legislation. For example, a
public inquiry could examine HIV and AIDS discrimination in one
or more specific areas. The Disability Rights Commission would
be conducting public inquiries.
7. REMEDIES
7.1. Remedies available under the DDA 1995
merely aim at obviating or reducing the adverse effect on the
complainant of any unlawful discrimination. In particular, employment
tribunals cannot make recommendations regarding the future conduct
of the respondent: eg removal of discriminatory practice/policy
and/or introduction of affirmative action programs (eg adoption
of a policy of non-discrimination on the basis of disability,
including HIV and AIDS, training of the workforce).
7.2. NAT reiterates its concern about the
overwhelming formal approach of the DDA 1995. The Draft Bill should
introduce remedies which address the group-based dimension of
discrimination.
8. CONCLUSION
8.1. NAT considers that the proposed Draft
Disability Discrimination Bill fails to address key deficiencies
of the Disability Discrimination Act 1995.
8.2. NAT is especially concerned with the
flaws of the definition of disability which disregards two key
issues: social discrimination and multiple discrimination.
8.3. It is vital that the draft Bill shifts
from an overwhelming formal approach of equality which relies
on individual disabled complainants to a model acknowledging systemic
discrimination which affect disabled people as a group.
8.4. In addition, NAT recommends that the
Bill:
— Includes provisions on medical examinations.
— Removes the Armed Forces exemption.
— Introduces a provision which aims
to prevent indirect discrimination.
— Includes provisions allowing organisations
and associations with a legitimate interest in the rights of people
with disabilities to act on behalf of the complainant.
— Provides for remedies which address
the group-based dimension of discrimination.
February 2004
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