"The role of the personal assistant as a support for autonomous living of people with psychosocial disabilities”
One of five persons lives with psychosocial disability. For this reason, on some occasions I will say we instead of people with psychosocial disability, because we all know what we are talking about: personal experiences or relatives’ and friends’ discriminated against for this reason.
People with Psychosocial Disability are one of groups with higher needs of support for decision-making and for communication.
Provision of adequate Support is a fundamental factor for many people with psicosocial disability to exercise legal capacity and it is the axis of the observance of Article 12 of the CRPD.
The notion of support is tied to the notion of accessibility and reasonable adjustments and refers to a "support to act" when disabilities are involved.
"In a broad sense, the support should be implemented at the local communities and it should comply with the conditions of accessibility." States Parties should take urgent action to encourage the de-stigmatization of persons with psycho-social disabilities to foster a community-based support network.
This network will not replace personal support (provided by a personal assistant) for decision making.
Support of every kind should have the following characteristics to be adequate:
Ø It will favor the expression and the will of the user.
Ø It will generate a framework of trust and mutual respect.
Ø Support’s role will not be fixed, but flexible.
The relevance of the SUPPORTS is bound to the decision-making process regarding freedom from torture and deprivation of liberty. We must anticipate this possibility by establishing networks of permanent support with a view to the future, besides of ensuring personal assistance.
The person of support, in routine medical consultation or emergency will act as a witness in case of medical discrimination.
The support person does not act by his/herself but provides information, accompanies the user and can belong to the social support network or be a personal assistant.
Their role is vital to accompany the de-institutionalization of men, women and children abandoned in madhouses. It is absolutely necessary to return to living in the community. States must implement a system of extra-family support that allows the exercise of violated legal capacity.
Family is important to people around the world. In countries that have not reached a STATE OF WELFARE, justice delegates in the family the role of support, even when families have seen their own rights vulnerated, ergo: they become more vulnerable. This is a trend in countries with high poverty rates and little social security structure. Families in these cases suffer multiple discrimination: poverty and disability.
The total closure of madhouses in 2020 is impossible without policies to implement support.
Supports are essential for people who abuse of legal and illegal substances, and who want to abandon substances, even psychiatric drugs.
A system of appropriate supports promoted by States Parties should ensure the exercise of rights in all aspects of life and take into consideration the following:
Ø Disability breaks at any moment in the life of people: birth, early childhood, adulthood, forcing a shift of culture equivalent to becoming a foreigner on one’s own land.
Ø Disability may be transient. Early intervention, in the framework of the social paradigm of disability prevents other disabilities. Urgent support is required to ensure the rights for living with a disability that may be temporal or not.
Ø It is necessary to educate both professionals and the society about UNDERSTANDING DISABILITY based on the framework of Human Rights.
I think of children with psychosocial disabilities and their families - especially their mothers or the women of the families who practice care. Supports are indispensable for the autonomy of the child, that should be favored since the early years of children with disabilities. I suggest:
Ø That families promote the autonomy of children by selecting supports so that they grow on an equal footing with other children and that they participate in the elections about his own life.
Ø The provision of support favors the natural growth of a family, especially the development of the mother.
o It is advisable not to require that the family provides permanent attention at home of children with disabilities, they should be encouraged to have support.
o I suggest public policies that facilitate access to staff to provide support not to create iatrogenic situations in the family.
Ø The industry around disability has disastrous consequences because of the fragmentation in different "services-products" for our support needs as much as the imposition of living under a specific life system.
There are supports of different nature, a personal assistant works as a nexus with the other supports. I understand that in relations established on equal terms all people use support from others and that it has multiple forms:
Ø Formal support: they facilitate the exercise of access to Justice, (lawyers), or access to Health (doctors of all disciplines and all technical and auxiliary staff of medicine and health / mental health). Other professionals or experts needed.
Ø Informal support anchored in the community: States Parties should influence public policies: campaigns to de-stigmatize the psycho-social disability to eliminate discriminatory attitudes that eventually lead to isolation and other harmful behaviors.
Ø The support offered by personal assistants.
Ø "Natural supports": Family and friends can be support in some cases. When someone suffers an accident they usually ask, “Do you have parents? Brothers? friends?” This is because in the social imaginary people count on a daily basis with others who act as natural supports, and it is not as obvious as it seems when who needs support is a person with disabilities.
o Example: at every meeting - work, leisure, family, etc. - I go with an assistant to talk later about that shared time and its vicissitudes. After every meeting we all have reflections and we need someone to talk to. Having lost the circle of natural support, my assistants play this role, and they are aware of the responsibility they have and the trust placed in them in these cases.
Some considerations to think about support systems:
Ø Professionals and non-professionals trained in Human Rights, knowing how to listen and how to ask in order to understand and not to act in the name of a higher interest.
Ø Understand the reality of persons with psycho-social disability today:
Persons with psycho-social disability suffer losses: work, housing, schools, universities and the "natural" support networks: families, friends...
The support will be oriented to facilitate the construction of a new social fabric. "Closeness, listening, company and respect as a condition of validity and reliability for the eventual decision of the person when designing a support."
Ø Consciousness of dignity in one's own life to demand dignity. No one can naturalize a "mad existence" for us.
The role of the personal assistant has its own characteristics and at the same time, it will be a personal construction according to the needs of each one, it is a dynamic construction, this is my personal experience:
"My decision is not to be hospitalized in case of re-crossing through an altered state of consciousness." How to achieve it without adequate support?
We will continue to de deprived of liberty if the vital importance of a system of supports in accordance with the personal needs of persons with psycho-social disabilities is not understood.
Personal assistants are very significant people in our lives because "the world" still discriminates for reasons of disability.
Neither the family members, nor friends, or professionals of any discipline - and especially of Mental Health - can guarantee that they will be true support for autonomous life.
Usually if I say "I was mad" the listener gets scared. The fear of psychiatric labels must be identified.
It is a construction where something as sensitive as "trust" is at play... who trusts "mad people"?
A Judge supported my right to have assistants chosen by me.
The Mental Health system forced me to renounce to my preference and imposed the hiring of psychologists in the role of support.
It will be the person and his/her personal conditions (whether professional or not) that will favor the possibility of being excellent supports. When they leave "the lens to look at the disease" and they get to look at the person in their singularity THEY WILL BE REAL SUPPORTS.
They will witness the discrimination and the pain caused by stigma, and they will be affected. We learn a lot together. We can question bonds that were accepted as "natural" without seeing that they were harmful. We must be alert in order to avoid establishing negative relationships with personal assistants.
I choose personal assistants in the conviction that people can generate new contexts, a different synergy can power unknown aspects and develop new abilities.
My personal assistants know that if I return to an altered state of consciousness nobody should not deprive me of freedom and that their role is fundamental: they have the responsibility that MY RIGHTS ARE RESPECTED BY OPPOSING A SYSTEM THAT COMES FROM THE MEDICAL POWER and involves THE FAMILY.
Without support this would not be possible. "
Lucila López