It has often been remarked that there is a considerable gap between the intentions and aspirations of the UN Convention on the Rights of Persons with Disabilities and the reality of day to day life for people with disabilities. Nowhere is that gap more visible than on the rights of persons with disabilities to the same sexual expression as everyone else. Many legal systems in countries (including those in the four UK countries) have still to be changed to be compatible with the UN Convention. Unless and until that happens the powers of the courts and devices such as legal guardianships, conservatorships, wards of court etc will continue to restrict the freedom of persons with disabilities to make up their own minds on a wide range of matters in the way the UN Convention provided for. ARC members will be all too familiar with the difficulties placed in the way of people whose lives are controlled by the need to gain the court’s consent to something. You don’t have to be Britney Spears to find that others can control your life in so many ways.
The SMARTS project (Supporting Me About Rights To Sexuality) deals with the contentious area of the sexual rights and freedoms of people with disabilities. It aims to fill the gap between the considerable amount of literature about sexual matters for people with disabilities and the fact that not much has changed in real life about people with disabilities asserting their rights to decide about and express their own sexuality for themselves. The main tool for achieving real change in this area is Supported Decision Making (SDM) – a structured process for helping people make their own decisions instead of others making them ‘in their best interests’. Whilst SDM can routinely be used on day to day decisions about money, leisure activities, what to eat or wear, it really comes into its own when considering love, friendships and sexuality.
Analysing why this lack of real change has occurred led the project to produce Guidance notes aimed at three distinct groups of people – all with a very different perspective on the same issue. The groups are parents/family carers; support staff in services and as a separate group – service managers. SMARTS also produced an easy to read toolkit for persons with disabilities.
The Guidance notes all share an initial common core, but then split apart to examine a series of contentious issues from the very different standpoints of the three different groups. The Guidance Notes make plain that just because SMARTS is examining an issue, it does not mean that the project is advocating or condoning the involvement of persons with disabilities in such topics. The list below of topics considered explains the need for such a clear and balanced approach.
- SDM and love, emotional attachment and relationship conflicts
- SDM and contraception, retaining fertility and forming a family
- SDM and taking care of your body and Sexually Transmitted Diseases
- SDM and the use of internet and social media for romantic and sexual purposes
- SDM and pornography
- SDM and commercial sex
- SDM and masturbation and the use of sex toys
- SDM and inappropriate sexual behaviour
- SDM and sexual orientation
This detailed structure allows the readers to dip into the material to focus on the issue(s) affecting them. Whilst the Guidance Notes might only be read by their intended target group, we do suggest that they might benefit from reading the same section for the other two groups as this will help them understand what is motivating the approach of others.
The SMARTS partnership of three delivery partner countries Greece, Spain and Portugal along with two technical partners (UK and Belgium) provided a rich and contrasting range of attitudes to sexuality in general and disability in particular and we gained some fascinating insights into dealing with sexuality in an Orthodox country like Greece. It is apparently a common practice for fathers in Greece to introduce their sons to the delights of sex by paying for them to visit a prostitute. (This ‘generous’ approach to sexual experience is not extended to daughters.) Adopting a similar approach to a son living in a residential service could cause managers, staff and other residents some understandable concerns unless great care was taken.
The easy to read Toolkit for persons with disabilities looks at SDM the importance of communication and consent within relationships. It also considers what abuse is and what forms it can take and what to do if you think abuse is happening to you or others.
All the material produced by SMARTS is free to use and can be found on the SMARTS project website and linked below. Here you can find Guidelines on Supported Decision Making in the field of sexuality for family carers, professionals and service managers.
- SMARTS General Supported Decision Making Trainers’ Guidance
- SMARTS Project Policy Recommendations
- SMARTS Easy to Read Toolkit for people with disabilities
- Guidelines on Supported Decision Making in the field of sexuality for family carers
- Guidelines on Supported Decision Making in the field of sexuality for service managers
- Guidelines on Supported Decision Making in the field of sexuality for professionals
ARC members are encouraged to make use of the materials and by doing so to deliver on the principles of the UN Convention on the Rights of Persons with Disability. We still have a long way to go in the UK on this.
Social Care Training Ltd
The SMARTS project was co-funded by the EU, Agreement number 2020-1-ES01-KA204-082783.
The European Commission’s support for the production of this publication does not constitute an endorsement of the contents, which reflect the views only of the authors, and the Commission cannot be held responsible for any use which may be made of the information contained therein.
The SMARTS Partnership is:
Three Delivery partners (DPs). They are service provider organisations in direct contact with PwD and their families.
- Fundació Privada Astres, Spain. (Project coordinator)
- Associação para a Recuperação de Cidadãos Inadaptados de Lousã(ARCIL), Portugal (Project partner)
- Idryma Prostasias Aprosarmoston Paidon I Theotokos(Theotokos Foundation), Greece. (Project partner)
Two Technical partners (TPs). They are organisations with expertise in the area of supporting PwD and with extensive experience in the provision of technical support in the fields of content development, development of reports, design & implementations of training contents, policy review & advocacy.
- European Association of Service Providers for Persons with Disabilities, Belgium.
- Social Care Training Ltd, UK