I would like to talk to you about people who are not considered capable of making their own choices, because their disability prevents them from having their own acceptable desires.
I see that the world needs to hear from those affected. The time I take to express my desire to live as a whole person has allowed me to keep joy inside, even if it really requires a lot of effort and courage.
I don’t understand why society has treated us so badly. Yet we are entitled to rights just like able-bodied and neurotypical people.
I think that the ableist system shows its deep inefficiency in the fact that it suppresses our rights while supposedly protecting us.
1) What I Have Learned During My Law Studies:
To be able to communicate is so important because it gives nonspeakers opportunities to study, to better understand the world, and also to become activists, and to fight for our rights.
What is legal capacity?
Legal capacity is the capacity to have rights and the power to exercise these rights. So the person is recognized before the law and can make decisions about his or her own life.
A person who has legal capacity is said to be legally “capable”, while a person who does not have legal capacity is considered legally “incapable”.
Normally, natural persons have full legal capacity to use and exercise their rights.
BUT there are exceptions in order to “protect” people who are not fully in control of their intellectual or physical abilities, such as people who are physically or intellectually “impaired”.
Able-bodied people are not asked questions, they exercise their rights. But for disabled people, the exercise of their rights is constantly questioned.
2) With Guardianship, We Lose Our Freedom to be Protected
If my parents had not been there to encourage me to express my views and wishes for my life, and if they had not supported the cause of autonomy for disabled people, I would never have been able to exercise my legal capacity. I would surely be in an institution, chained to a wall of silence, without political involvement or the possibility to study, without being free to make my life choices. This unchangeable destiny would have jeopardized my freedom, and I would have had only crumbs. The system is difficult to live with when you don’t fit into its codes of normalization.
To accept these conditions of existence is to make this dream of autonomy so fabulously erected as a banner, this heritage of years of struggle, a forgotten and denied history. For all that, most people do not know the struggle for the rights of disabled people or are unaware of our experience, because it is better for them not to feel guilty. Our experiences seem completely different from those of able-bodied people, yet we live in the same society, where we are supposed to have equal rights.
We often do not have legal capacity because able-bodied people decide for us.
In many countries, people with autism and mental or intellectual disabilities are considered incapable of making decisions and are therefore placed under legal protection. This exposes people to the risk of abuse as the guardian can make all decisions on their behalf without any prior consultation.
What is society offering? It gives us an illusion of autonomy.
Many people with disabilities are limited in the exercise of their legal capacity. They often have a legal guardian who makes all or some decisions for them. Their access to justice is also limited due to lack of accessibility or reasonable accommodation.
3) Supported Decision Making : How I choose the Way I want to Live
The United Nations Convention on the Rights of Persons with Disabilities confirms the right of full legal capacity and the right of access to justice in its articles 12 and 13. Persons with disabilities, regardless of their disability, must be able to make decisions for themselves and have access to justice on an equal basis with other citizens.
To help people make their own decisions or have direct access to justice means they have autonomy and control over their lives. In a broad sense, assisted decision-making is part of the natural process of life. Almost all people facing an important decision seek support from others.
Supported decision-making is about giving people with disabilities back control over their own lives by recognizing their legal capacity and assisting them in making decisions that affect them.
Supported Decision Making (SDM) is a way of making decisions that people with disabilities can use. With SDM you work with the people you choose to help you understand your own choices and make your own decisions about your life.
I want to defend this fundamental right of freedom of choice. I want to be my own captain. We deserve to have dignity but the validation system tells us that we are incapable of knowing what is good for us. Let’s make this future society one where our rights are respected, regardless of our differences.
My name is Nicolas Joncour and I am an AAC user and nonspeaking French autistic student. I am 23 years old and I need full time assistance. I communicate by typing on a keyboard or an iPad. In 2017 I became the first French nonspeaking autistic student to pass the Baccalauréat exam, which is needed to go to university in France. First, I enrolled in physics college. But I have chosen to study law and sociology, as I am interested in the implementation of CRPD (Convention on the Rights of Persons with Disabilities), especially article 12 on legal capacity. I have been active for several years in associations advocating for the rights of autistic people and for us to have independent living, so we can be the master of our destiny. I live in a university residence. I managed to obtain financial aid for full-time assistance, which is unfortunately not very frequently available for people with cognitive disabilities in France. That’s why I joined The Spellers and Allies Advocacy Network. Together we fight to #EndCommunicationDiscrimination because communication is a human right.