According to the Declaration of Human Rights, privacy is a fundamental right and an intrinsic human need. 18 article of the Spanish Constitution says that privacy is related to dignity and honor.
In entities such as Aspace and other organizations that serve people with multiple disabilities and neurodevelopmental disorders, the user's right to privacy must be taken into account from an ethical point of view. Good practice recommendations and protocols are tools that facilitate ethical application in professional interventions.
Ethical application justifies the availability of good practice guides for the defense of the right to privacy. Training and information on privacy for all the agents involved (users, families, professionals and institutions) are key to guaranteeing this basic right.
Spheres of intimacy for people with multiple disabilities
Privacy is a right and as such, it is not claimed, it is exercised. The human being is by nature a social agent but he also needs his area of intimacy. In this sense, Castilla del Pino, C (1988), distinguishes intimacy in three dimensions: the public, the private and the intimate.
The dimensions act i private they depend on spatial aspects: that public which is something capable of being observed, and that privately that may be left to the expectation of others, but that we keep it at recess.
The author relates the dimension intimate with a psychological sphere, related to the thoughts or actions of people's desires and feelings. So, the body, spaces, personal things and information are the main elements that make up the intimacy.
It is common for privacy to be related to freedom, as no one can access our body, information or things without our express authorization. On the other hand, ethics reminds us that privacy is a minimum demandable value and that it does not depend on people's degree of autonomy, but on the respect they deserve.
Consequently, those of us who relate to, accompany and care for people with multiple disabilities, must offer them the necessary support to exercise this right.
When we talk about the sphere public of privacy by people with disabilities we mean living spaces, the community environment and shared rooms. As we will discuss later, the professionals and the institutions must guarantee that there are privacy spaces in the residences or centers to which the user belongs. From the Aspace Catalunya Foundation we actively promote the creation of these spaces.
Ethical recommendations for the exercise of privacy
Sílvia Alba, social worker at Aspace Catalunya, expert in ethics applied to social and psychoeducational action and member of ERAE de Dincat, made a Workshop talk on the right to privacy in people with disabilities. In this session he gave a series of recommendations on the treatment of the right to privacy by care professionals and organizations that serve people with disabilities.
Before mentioning the recommendations, it should be noted that each person needs specific and individualized supports that must be assessed according to the situation. Therefore, having spaces for ethical reflection and action is fundamental to solving ethical dilemmas in institutions.
Here are some of the ethical recommendations for professionals and organizations so that people with disabilities can exercise their right to privacy:
Professionals
Intimacy during personal hygiene
- Analyze the necessary supports and avoid limiting the person's autonomy that is taken care of
- If the person can state what support they need, we will agree our actions beforehand with them.
- Ask permission to approach his body. If you cannot consent, we will observe your expressions for avoid taking any action that is not appropriate.
- Observe its expressiveness, explain which part of the body is being touched and for what purpose.
- Do not exceed the time necessary to attend to intimate hygiene without justification.
- Have respect for the nudity of the person, avoid for example: going from the shower to the room without dressing the disabled person or leaving a diaper change in the middle to attend to another person.
- Bedroom and toilet doors must be kept closed when occupied. If it is necessary to support a person with multiple disabilities in the toilet, we can position them and re-enter when they notify us.
- Avoid opening doors to make comments related to the day-to-day work when you are attending to a person when it is not strictly necessary.
Time and privacy
- All people with neurodevelopmental disorders have their own rhythms with respect to physical, cognitive, social, communicative, etc. functionality, and this must be respected.
- An attentive look and patience make it easier to bond with people who have communication difficulties. The professional must help her to understand, to make her feel recognized.
- They must create quiet and warm home environments, especially in residences.
The spaces
- Access to rooms and individual areas must be authorized by the user, which should be present when the professional accesses it.
- In residences, the possibility of choosing a single or shared room must be offered, whenever possible. When the rooms are shared, they must have elements that guarantee privacy.
- Some recommendations included in residence quality documents are important to consider because of their impact on the person's privacy, such as giving users the opportunity to personalize spaces with decorations or personal items.
- Have cupboards and drawers available with a key so that they can keep those objects that they consider more private.
- Do not rummage through cabinets and drawers without permission.
- Time for solitude or intimate and close contact is necessary for everyone, therefore individual use of the rooms must be available and if they are shared, coexistence agreements must be made.
- Avoid crowded common spaces and collective activities that generate a stressful environment.
- Access to common spaces limited to the people who use them and professionals only when necessary. Agree on schedules for family visits when there is no assistance activity.
- Limit professional or institutional visits. If they are essential, the best option is to do them in common spaces and without users.
- To publicize good practices on intimacy and sex-affective to avoid inappropriate behavior in community spaces.
Confidentiality and professional secrecy
- Absolute respect for the person and their life.
- Use information when strictly necessary and for specific purposes.
- The content of the reports must be 100% fit for purpose.
- Keep professional secrecy except justification.
- Treat all people with the same respect regardless of their cognitive ability.
- Professional coordination must take place in appropriate spaces. Professionalism must be maintained and common areas with users must be avoided to discuss the management of people in the center.
- Avoid making value judgments regarding the information provided by users and their families.
Organizations
- Develop architectural projects that respect people's privacy.
- Regulate access to facilities by regulation.
- Ask for respect during inspections. When they are carried out in the rooms, the users must be present.
- Constitution of Spaces for Ethical Reflection and Action (ERAES), to deliberate on situations that generate ethical conflicts. It has to be the consultative body for good practices and the preparation of ethical recommendations.
- Offer training in applied ethics and good practices.
- Establishment of spaces for reflection with users to consider the aspects that affect them in their daily lives.
Promotion of the right to privacy of Aspace users
At Fundació Aspace Catalunya, we take the user's right to privacy very seriously.
Training sessions are held for professionals and families. We also work with reflection groups with people with multiple disabilities who are part of the different ones services of the entity to deal with issues about their privacy. "We work on the good use of the right, how to detect inappropriate situations, how to know how to say NO when something you don't like and claim spaces of solitude when they are required" according to applied ethics expert Sílvia Alba.
In terms of individual space "we have activated mechanisms that allow us to guarantee good professional practices and by the residents. As for example: the do not disturb posters on the doors of the rooms and bathrooms, the arrangement of drawers with keys and the facilitation of coexistence times for private use of the rooms”.
The day to day in one residence, an day care center and / or occupational for people with multiple disabilities generate ethical dilemmas that need to be resolved to promote good coexistence and the right to privacy of people with disabilities.
"We have the right to preserve the privacy of our most beloved things, our information, the deepest things that we would keep in the most hidden space in the world."
RECOMMENDED BIBLIOGRAPHY
1. Castilla del Pino, Carlos. (August 1, 1988). Public, Private and Intimate. The Country Accessed on December 10, 2022, retrieved from https://elpais.com/diario/1988/08/01/opinion/586389610_850215.html
2. Human Rights Commission. (1948). Universal Declaration of Human Rights. Paris: Paul Williams.
3. Ethics Committee of Social Services of Catalonia (2017). Intimacy in residential centers for people with functional diversity. Regarding the use, access and supervision of the spaces. Generalitat de Catalunya, Department of Labour, Social Affairs and Families. Accessed December 15, 2022. Retrieved from: Enllaç
4. United Nations. (December 13, 2006). Convention on the rights of people with disabilities. Accessed December 19, 2022. Retrieved from https://treballiaferssocials.gencat.cat/web/.content/03ambits_tematics/11discap acitat/2012_04_11_convencio_drets_persones_discapacitat_catala.pdf
5. Various authors. (2016). Respecting privacy: protection and warm treatment. Recommendations for good practice in social services. Oviedo: Ministry of Services and Social Rights of the Principality of Asturias.
