ARTICLE 19 is currently organising consultations on the Principles on Freedom of Expression and Persons with Disabilities. During the consultation period, we are running a series of blogs exploring the issues addressed in the draft Principles in a greater detail. The first guest blogger is by Janos Fiala-Butora, Director of the Central Europe Program of Harvard Law School Project on Disability. If you are interested in writing a guest blog, please do get in touch!
Guest Blog by János Fiala-Butora, Harvard Law School Project on Disability
The experiences of persons with severe cognitive disabilities shows that the ability to express ourselves is a fundamental precondition of personal autonomy. Since non-disabled persons are rarely lacking this attribute, they often take it for granted. However, if somebody is in need of assistance to conduct basic communication, denying that assistance can have far-reaching consequences. It can undermine someone’s ability to make decisions, legally erasing them from the circle of “competent” individuals, with far-reaching implications for their ability to enjoy a wide range of fundamental rights, beyond free expression.
Some persons with disabilities have difficulties communicating in a conventional way and need assistance in expressing themselves. A range of communication techniques and tools have been developed to address their needs, such as tactile communication and augmentative communication. The Convention on the Rights of Persons with Disabilities (CRPD), adopted in 2006, requires states parties to make these communication techniques and tools available for persons with disabilities in fulfilment of their right to free expression. But for persons with disabilities, access to communication tools and technology is important not only to develop and maintain social contacts. For some, it is crucial to exercise their personal autonomy, to be legally allowed to make decisions on their own behalf. Lack of access to communication tools and technology can result in total social exclusion sanctioned by law, with implications for a range of fundamental rights.
To understand the importance of communication as both a right in itself, and a crucial enabling right, we have to understand the workings of legal capacity laws. “Legal capacity” is a person’s right to make decisions on his or her own behalf. All adults have legal capacity, except those whose legal capacity has been limited by a court decision. For them, the court appoints a guardian to make decisions on their behalf. Guardianship can typically be imposed on the basis of cognitive and psycho-social impairments, such as intellectual disability, dementia, brain injury or mental illness. It rests on the assumption that some persons with disabilities are unable to make rational decisions, therefore others need to decide what is in their best interests.
Guardianship is a severe interference with the person’s autonomy. A guardian can make all kinds of decisions on behalf of a represented person: manage their property, consent to medical treatment (including invasive and non-reversible treatments), decide where the person will live, whom they will maintain contacts with, etc. The person’s own will loses its legal relevance on these matters: it is purely the guardian’s will which has any legal effect. That is why guardianship can have serious implications for a range of fundamental rights from freedom from torture to the right to property and the right to respect for one’s private life. While guardianship regimes vary across jurisdictions, and abuses and safeguards vary as well, all countries of the world utilize some forms of guardianship, making abuses possible.
Guardianship has been criticized by disability rights advocates and human rights bodies for several years, and some have asked for its complete abolition. While there certainly are situations when some persons with disabilities are unable to make decisions, that does not mean that guardianship is the right solution for them. It is possible to use alternative interventions, such as supported decision-making, which would allow people with cognitive difficulties to express their will in a legally valid form, without being placed under guardianship.
As disability advocates have been arguing for some time, and researchers confirmed recently, communication difficulties are one of the reasons for the overuse of guardianship. Persons with cognitive difficulties can have difficulties expressing themselves. Some have blurred speech, or communicate non-verbally. In the case of persons with psycho-social disabilities, blurred speech can also be a side effect of psychiatric medication.
Persons who have difficulties in communicating and expressing themselves are often prejudicially stereotyped as being unable to make rational decisions. Blurred speech can be interpreted as a sign of incompetence in the courtroom and outside of it as well. A person’s intellectual impairment can be assessed to be more severe than it in fact is, and can lead to being placed under guardianship even where it is unwarranted. It is not unheard of for persons without any cognitive impairment at all to end up under guardianship, purely on the basis of their communication difficulties. Persons with cerebral palsy, deafness and deaf-blindness, for example, have been legally incapacitated because the courts were unable to satisfy themselves that they were capable of making rational decisions.
While in theory expert assessments should be able to separate communication difficulties from cognitive impairments, this is often not the case in practice. Prejudice against persons with disabilities affects both the judicial system and its experts. That is why disability advocates often stress that guardianship reform should expressly recognize the principle that communication difficulties should not lead to declarations of incompetence. Some newer guardianship laws have indeed adopted such provisions.
The situation of persons with severe intellectual disabilities is especially precarious. Some of them are communicating using alternative communication techniques and tools which can be interpreted only by trained experts. In the past, such communication difficulties have often automatically led to legal incapacitation. Recently, the spread of new ways of communication went hand in hand with the recognition that persons with severe disabilities are also able to make decisions regarding their lives, if they are given adequate support, including information in a format they can understand and a means to communicate their decision.
Whether all persons with severe disabilities can make their own decisions is one of the most controversial and hotly debated questions of the CRPD. Some scholars argue that no one should be placed under guardianship, but be provided with support instead. Others claim that some persons with very high support needs will never be able to make their own decisions, and therefore guardianship should be retained as a measure of last resort for them. However, both sides agree that the potential of persons with severe disabilities has been seriously underestimated by the courts, and many persons who are currently under guardianship could make their own decisions if given the chance.
It follows that the development of better communication techniques and their application in practice should lead to more and more persons with severe disabilities retaining their legal capacity and avoiding guardianship. For some, this will be possible because having the opportunity to make decisions will in fact result in improved cognitive skills – it has an educational effect. If a person with a severe disability is never asked for their opinion on anything, they will never develop the skills necessary to form an opinion. For others, they might already possess the necessary cognitive skills, but in the absence of accessible forms of communication, they would be unable to convince the outside world about either their abilities or their viewpoints. Newer forms of communication can unblock the obstacles persons with severe disability are currently facing and will allow them to make their own decisions.
We do not know whether technology allowing persons with the most severe disabilities to communicate and make decisions will ever be invented. However, we can expect that a significant proportion of persons considered uncommunicative today will be able to make themselves understood in the future with the help of new technologies. We also know for sure that there already are communication techniques and technologies available which could help a large number of persons to communicate, but they do not have access to them. As a result, they are considered “incompetent,” and they are denied the opportunity to express themselves, instead guardians are appointed to make decisions on their behalf. It is, therefore, essential to expressly recognise states’ obligation to make alternative communication techniques available and accessible for all persons with disabilities.
It is also vital that states make efforts to combat harmful stereotypes of persons with disabilities, and/or communication difficulties, as incapable of comprehension, expression, or rational decision-making. For persons with disabilities, the ability to communicate and be heard does not simply facilitate the development of social interactions, but is also a precondition for enjoying their personal autonomy, and being legally recognized as full and equal members of society.