"I like to have the security that, if something happens to me, I have someone to support me"
A little less than two years ago I didn't even know about the figure of personal assistance and I must admit that the first time I heard about it I had some reservations. This term, assistance, seemed somewhat paternalistic to me. But this, as we will see below, is very far from reality. In this story we will be accompanied by Cristina Mañas, currently the only person who has a figure of personal assistance within the Germà Tomàs Canet Foundation .
The United Nations Convention on the Rights of Persons with Disabilities states that all persons should enjoy legal capacity and that measures shall be taken to provide such support as these persons may need in the exercise of their capacity, ensuring that their rights, wishes and preferences are respected. It is within this concept that the figure of personal assistance is found.
Personal assistance, currently only recognized in Catalonia, aims to preserve people's ability to work and offers them support in all or some areas of their lives, depending on what the person considers necessary .
This implies that the person is a participant in their process and is fully involved in decision-making. Therefore, the figure of personal assistance introduces a new way of doing things: non-incapacitation.
As a social worker in the field of mental health and legal protection of people (guardians and curators), I have always felt a total responsibility for people's lives, feeling the successes and failures as my own. Taking into account my personal, professional values and those of the entity where I work, I have always tried to establish agreements with people and respect their decisions, but the fact that these people have a modified capacity to act cannot be ignored and this makes me feel responsible for their well-being.
A story of shared responsibility
The figure of personal assistance implies a shared responsibility. Although it may seem paradoxical, I must confess that, at first, this scared me. In the long run, however, I have realized that it is more liberating for me and for the other person. Now I see Cristina capable of making decisions, dignified and responsible for her life. In this way, what, at first, was a feeling of fear due to shared responsibility, gradually translated into a feeling of tranquility. Now I value the advantages of this figure and consider it ideal for getting more out of the relationship and for establishing a bond.
Manuals for professionals on decision-making support for people with disabilities
During the first year of carrying out my duties with this figure, I considered requesting a measure of judicial protection and requesting a guardianship. As a result of my lack of experience with this figure and not having changed my patterns of action with respect to other people with a guardianship or curatorship, I had the perception that I was not making progress in a work plan. After a day of training on the figure of personal assistance, I understood that it was necessary to implement a different perspective and a different way of doing things, and that this figure implies that the person is the protagonist of their evolution and improvement of their life. From that moment on, we were able to begin to define Cristina's goals while creating a work plan aimed at satisfying her interests and needs.
The figure of assistance is completely voluntary, that is, people ask to obtain this support. In Cristina's case, however, this was different. She requested a broader figure of protection, guardianship, and, as she explains, "I didn't want to be protected, but I needed it." She was aware that she needed support. No one wants another person to manage their life, and that is why I think that the fact of recognizing this and taking the step is admirable and characteristic of brave people. However, Cristina was assigned this figure of personal assistance, and, as she explains to us, "it raised my self-esteem, made me feel important, put me in my place. I feel that with my health circumstances, this dignifies me as a person. I thank the judge for that."
"I am still a person, with my identity and physical person, but I feel more protected"
The Germà Tomàs Canet Foundation supports Cristina in some areas of her life and she says she is very happy, but I would like to highlight another more relevant aspect that she explains to us: "I count on the entire Fundació team, not only with my references, but with a whole team of people. I like to have the security that, if something happens to me, I have someone who supports me. This support as an institution gives a lot of security, especially at a legal level."
That is, the reference figures are the people with whom she creates a bond, works on goals, obtains support, accompaniment, among other functions, but the reality is that there is a larger team of people working alongside her and, as she says, there is an entity behind it that guarantees that this support is judicially supervised.
Obviously, there have been changes in Cristina's life, there has been a before and after with this figure. She explains to us that "I am still a person, with my identity and physical person, but I feel more protected. I have the Foundation."
Personally, I am comforted to know that she feels protected, it is a key factor that she maintains her essence as a person and is able to make her own decisions.
Cristina continues to explain: "I feel very comforted on a personal level. I don't feel constrained by anything in the world, and if I were under guardianship, I wouldn't feel that way." This makes me wonder what our relationship would be like if she had someone other than the personal assistant. If that were the case, she thinks that "she would be more rebellious because the guardianship is limiting. The judge dignified me and I feel super supported . " I believe that this good disposition, motivated by the personal assistant, is key to carrying out our professional work in the best possible way.
How does Cristina see our relationship?
"The figure of assistance is much more than providing support, this is just the tip of the iceberg." This shows the wide attention it receives, in all those aspects that were previously agreed upon, in her case the personal, health, economic and patrimonial areas. "You are involved in my life, I count on you, I count on this reinforcement to fulfill my goals and aspirations," says Cristina, who also explained to me that "I would recommend this figure" and that everyone "must know what it is, that we are not monsters, neither we [people with a mental illness] nor the foundations. We need to spread and normalize it." Obviously, the more knowledge society has about this figure and about people with mental illness, the more we will be able to reduce the stigma.
This conversation with Cristina has helped me reflect and, above all, has given me the opportunity to know her point of view and her feelings. It has served to bring us closer and strengthen our bond. A bond that enables us to overcome any future event. It is clear that, with the introduction of this figure, there has been a paradigm shift. The key is to carry out an intervention based on respecting the person's will, their autonomy and their preferences, but making our professional criteria clear. When this new perspective is assumed as a guideline for action by professionals and normalized by society, we will have taken a big step forward.
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