Table 7establishes the potential for developing a human rights framework for public health interventions, in a way that could accommodate the complexity and challenges of capturing the disabling experience and reconciling it with the concerns of public health. We are particularly mindful that the human rights approach was respected by proponents of the four models outlined inChapter 3. In our scoping review, we also noted the move towards thinking of‘health’as a right and how, for example,‘personalisation’ and‘choice’were becoming especially prominent in health- and social-care discourses.24,88,434This, and the
discussion above, informed our decision to explore a rights-based ethical framework based on the CRPD. In particular, we felt that Article 3 was inclusive of ethical principles relevant to public health and public health research and committed to the duty of equality, while also emphasising life-course, intersectionality and gender. Article 3 specifically notes the following:
(a) Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
(b) Non-discrimination;
(c) Full and effective participation and inclusion in society;
(d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
(e) Equality of opportunity; (f) Accessibility;
(g) Equality between men and women; and
(h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities
FromConvention on the Rights of Persons with Disabilities, United Nations, © 2006 United Nations.
TABLE 7 The CRPD and public health indicators
Article
General inclusion of
the CRPD Example of intervention Disadvantage Gap Gradient
Individual factors
1 Promote, protect and ensure respect and dignity of human rights
CRPD capacity building in public health
5 Equality and non-discrimination Inclusion in broader public health campaigns (e.g. smoking, alcohol, drug use)
6 Women with disabilities Screening provisions (e.g. breast and cervical)
7 Children with disabilities Public health education in schools (e.g. nutrition and fitness)
8 Awareness-raising Disability and public health training
for professionals
Environmental and access
9 Accessibility Universal design as feature of public
health provision
10 Right to life Balanced information on disability
(e.g. during antenatal screening) 11 Situations of risk and
humanitarian emergencies
Interventions to aid disabled people to flee violence or conflict
12 Equal recognition before the law
Equality inclusions in public health awareness (e.g. stroke symptoms outreach to minority ethnic communities)
13 Access to justice Right to redress public health
exclusions
14 Liberty and security of person Creation of public health of disability 15 Freedom of torture or cruel,
inhuman or degrading treatment or punishment
Ensuring ethics, respect for bodily integrity and dignity in public health 16 Freedom from exploitation,
violence and abuse
Preventative policies and actions against disability hate crimes 17 Protecting the integrity of
the person
Inclusion in services (e.g. safeguarding, mental health, learning disability, etc.) 18 Liberty of movement and
nationality
Disabled children registered and cared for
Social participation
19 Living independently and being included in the community
Formal or informal personal assistance (e.g. people with dementia)
20 Personal mobility Removing barriers to accessible
transport (e.g. people with visual impairments)
21 Freedom of expression and opinion, and access to information
Public health choices and participation in interventions and design
Article 3 connects well with experiences of disability by adapting an inclusive approach and ensuring that experiences are part of mainstream discussions in a meaningful rather than tokenistic way. Dignity, for example, cannot stand alone but is grounded in other facets of mainstreaming disability (Figure 8). A member of our project steering committee, Professor Peter Beresford, asked us to envisage models as three-dimensional structures. If one views accessibility as the base of a stepping-stone structure, it must be considered before equality of opportunity. That in turn provides a stepping stone to ensuring respect for intersectionality. This approach equally respects a social model perspective on social justice and a critical disability reflection on interrogating what inclusion and exclusion of (dis)ablism means.
TABLE 7 The CRPD and public health indicators (continued)
Article
General inclusion of
the CRPD Example of intervention Disadvantage Gap Gradient
22 Respect for privacy Public health access and confidentiality of health needs (e.g. mental health and HIV)
23 Respect for home and
the family
Enabling homes and healthy families (e.g. heating provision)
24 Education How to live well with secondary
conditions (e.g. diabetes, obesity and pain)
25 Health Access to primary health, mental and
dental care
26 Habilitation and rehabilitation Rehabilitation for offenders (e.g. learning difficulties/disabilities)
27 Work and employment Evaluating employer resources and
policies for reasonable accommodations 28 Adequate standard of living
and social protection
Impact of social protection schemes 29 Participation in political and
public life
Inclusion in PPI, CCGs, voluntary organisations and public health boards 30 Participation in cultural life,
recreation, leisure and sport
Participation in recreational activities (e.g. swimming)
Macro-structural
31 Statistics and data collection Indicators of public health and disability along the life-course 32 International cooperation Public health and disability policies
integrated in the SDGs 33 National implementation
and monitoring
Evaluation of public health and disability policies
CCG, Clinical Commissioning Group; PPI, patient and public involvement.
If an intervention, and the research evaluating it, is respectful of disability rights, it can be related to several components of the CRPD and scored accordingly (Table 8). Ethical and empirical design could thereby become mutually reinforcing, whereby ethical design leads to empirically robust public health research that addresses disabling health inequalities.
This forms the basis of our (ethical) decision aid/checklist, which can be further strengthened by being considered in relation to the Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) framework435and its concern with reach, effectiveness, adoption, implementation and maintenance. One
of the strengths of RE-AIM is its orientation to the evaluation of interventions in real-world and complex settings in accordance with robust methodologies.435RE-AIM can also be easily mapped on to the CRPD,
with five concepts having particular relevance, namely dignity, inclusion, intersectionality, accessibility and equity (Box 3).
A simple scoring system could help one to understand how well rights are being implemented. For example, a rating-scale such as the Pragmatic Explanatory Continuum Indicator Summary436would give an
evaluation or score of an intervention and how well research evaluating that intervention respected ethics and the equity of persons with disabilities (Table 9). A score of 0, 0.5 or 1 (100%) can be given.