Telltale signals

An ear piercing provokes a debate in Russia about how people with profound intellectual disabilities make decisions

Earlier this year, “Lighthouse Charity Foundation” director Lida Moniava assumed guardianship of a boy named Kolya who’s been diagnosed with microcephaly, poor eyesight, epilepsy, and difficulty swallowing. Kolya spent the first 12 years of his life in a group home where he lay in bed almost all day long. Writing on Facebook, Moniava says she and Kolya now go on regular walks, ride public transportation together, and once even flew in a helicopter. He’s also been accepted to a local school.

When Moniava decided to pierce Kolya’s ear so he could wear an earring, however, it caused a heated, protracted debate on Facebook, resulting in a complaint that brought child services’ officers to her home. Critics say Kolya might not actually enjoy Moniava’s diversions and they warn that some of these activities might even harm him. Meduza looks at how people with profound intellectual disorders elsewhere around the world manage decision making.

In this text, we’re talking about people with cognitive impairments that greatly limit their ability to communicate (these individuals often cannot pronounce even single words). These people often face other obstacles, as well, such as physical disabilities, health issues, and sensory impairments. The terminology here is “profound intellectual disabilities” and “multiple disabilities.”

Individuals in this group often find it difficult to acquire new skills, and the range of skills within their reach is significantly limited. People with profound intellectual and multiple disabilities need support on a daily basis with routine tasks, such as getting dressed, eating, and bathing.

Researchers and professionals now discourage outdated approaches that isolated such individuals in institutions or similar facilities. Conventional thinking now advocates the socialization and inclusion in public of persons with profound intellectual and multiple disabilities.

Not only human rights organizations but also the United Nations has endorsed this position. In 2006, the UN adopted the Convention on the Rights of Persons with Disabilities, which Russia ratified in 2012. This document ensures respect for “the will and preferences” of disabled people and their “enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.” States that signed the convention also vowed to “take effective and appropriate measures” to facilitate the “full inclusion and participation” of disabled people in their local communities.

“It’s critical to understand that it’s not just that their impairments make matters complicated for them; it is also about living in a world that is not well-adapted to them. Yet, people with profound intellectual and multiple disabilities have the right to be included in their communities daily,” says Professor Iva Strnadová, an expert in special education and disability studies at the University of New South Wales in Sydney and the co-author of the new book, “Belonging for People with Profound Intellectual and Multiple Disabilities: Pushing the Boundaries of Inclusion.”

To facilitate the kind of inclusion Strnadová recommends, policymakers have drafted accessibility initiatives to guarantee equal access to physical environments, transportation, information, and communications systems, and other public facilities and services.

Including a child in a group celebration is nice, but sticking someone in the corner as a passive witness isn’t a real involvement, development experts say. Persons with profound intellectual and multiple disabilities need opportunities to develop their self-determination and self-advocacy skills. They need opportunities to develop and exercise their ability to solve problems and make decisions and choices.

Social involvement also applies to education, though the best pedagogies for persons with profound intellectual and multiple disabilities remain a matter of dispute. In different countries, the options for cognitively impaired people range from attending special schools to regular schools where children attend the usual classes (with support and with supplemental individual or group lessons and adapted learning programs).

“Most importantly, the capacity of people with profound intellectual and multiple disabilities is becoming — slowly but surely — appreciated,” Iva Strnadová writes. “Instead of focusing on the dependency, realities such as reciprocity, dignity, capability, rights, personhood, and citizenship of people with profound intellectual and multiple disabilities are being explored and supported.”

This is certainly possible. The main problem here is that the wishes of persons with profound intellectual and multiple disabilities often go overlooked even in countries that have long made special efforts to consider individual preferences. In some cases, the people surrounding someone with profound intellectual and multiple disabilities simply fail to recognize that the individual even has particular preferences.

Communicating with people who have profound intellectual and multiple disabilities can be challenging, but it is possible and it represents a way for such persons to attain some autonomy. This requires someone nearby who is attuned to the individual’s reactions and needs — a level of care that demands state support and significant financial investments.

In other words, strategies around the world today for valuing and caring for people with profound intellectual and multiple disabilities concentrate on supporting them make decisions — not entrusting their full custody to others who merely act “in their interests.”

Professor Iva Strnadová emphasizes that it can take years to learn the “language” of a person with these disabilities. “It is impossible to answer in general terms how we know what somebody with profound intellectual and multiple disabilities wants,” says Strnadová, “but it is certainly possible that a parent/carer/support worker/friend, who knows a person with profound intellectual and multiple disabilities very well, can understand from their style of communication what their preferences and wishes are.”

There are various approaches, though they’re not always easily implemented. For someone without a profound intellectual disability, such communication requires significant effort and even special training. Nevertheless, it is possible. “From my experience, most persons — even the ones with profound disabilities — can express at least some of their emotions to some extent, for example, by their muscle tone, facial expression, and so on,” says Anna Karin Axelsson, a registered physical therapist and a researcher at Jönköping University in Sweden who specializes in disabled children. “The people who know the person the best, many times their parents or siblings, know how to interpret these expressions.”

Here are just a few approaches that help caretakers recognize the wishes and preferences of someone with a profound intellectual disability:

• Sounds, facial expressions, and movements of the eyes, hands, or any other body part. After enough time, caregivers in some situations can determine what an individual with profound intellectual and multiple disabilities wants, based on a particular sound.
• Previous experience with the individual. For example, if someone shows anxiety in noisy surroundings, a crowded concert is unlikely to be very enjoyable.
• Reactions to “yes” and “no” cards or cards depicting particular activities.

Asked about how to recognize when someone with profound intellectual and multiple disabilities might want an ear piercing, Strnadová told Meduza that the individual might signal his or her wishes in subtle ways. “For example, a person with profound intellectual and multiple disabilities and their parents are looking together at photos from a recent family celebration. The parents in this scenario could realize that their offspring with this disability pays particular attention to photos where people have earrings, and communicates to them that they want to have an earring, too. After some time of exploring this and making sure that this is the communicated preference of their offspring, the parents could arrive at an understanding that an ear piercing is what the person with profound intellectual and multiple disabilities wants, and follow up on their wish.”

To make it simpler for persons with profound intellectual and multiple disabilities to speak to new acquaintances, they’re sometimes issued communication passports (these exist in Russia, as well) that describe their medical information, personal preferences (like the fact that they hate snow or calm down when hearing classical music), recommendations about how to interact with them, and more. These passports can be uploaded to tablets or printed on paper. It is, however, critical that “advocates” who already know the disabled person should be involved in facilitating such communication.

Even in this case, it’s critical to involve the individual as much as possible in the decision-making process and concentrate on the values and wishes the person has demonstrated previously. Otherwise, caregivers risk rendering assistance that is suboptimal for that particular person. It is nevertheless important in these circumstances to weigh how well someone with profound intellectual and multiple disabilities can understand and make decisions.

This does not mean walking up to a person with profound intellectual and multiple disabilities and saying, “You have cancer. Do you consent to five courses of chemotherapy?” To convey this information to people in this situation, as far as it’s possible, caregivers can show them pictures or use other means of communication. Specialists also recommend focusing on similar past experiences. That logic informed the following two cases:

• When doctors proposed repeating a tracheostomy procedure on Neil, who had profound intellectual and multiple disabilities, his parents decided it was unnecessary because he’d been visibly distressed and uncomfortable after a previous tracheostomy. The decision was difficult because the operation was vital to Neil’s survival. As a result, the boy died.
• In another case, a boy named Sam with profound intellectual and multiple disabilities, also had diabetes, was afraid of needles and resisted any attempted blood tests. The medical team treating him interpreted this to mean he was refusing vital treatment, but doctors hesitated to restrain him for fear of violating his human rights. Physicians ultimately learnt that forcing treatment, in cooperation with Sam’s mother and others who knew him, was required because Sam lacked the capacity to consent to blood tests, and his caregivers needed to act in his best interests.

In other words, people with profound intellectual and multiple disabilities can be trusted to decide a lot more than what they want for dinner or if they’d like to watch TV. Under certain circumstances, their agency extends to decisions about medical procedures, sexuality, and even death.

“People with profound intellectual and multiple disabilities can teach us a lot if we just allow time to be together and attune to each other,” says Professor Strnadová. “They certainly remind us that none of us is fully independent. Rather, we are all interdependent, needing each other’s support and empathy.”

Text by Darya Sarkisyan

Translation by Kevin Rothrock