“There is only one world, and it must have room for all of us,” says Linamara Battistella, a professor of Physiotherapy and Rehabilitation/Physiotherapy at the University of São Paulo School of Medicine, a teacher, researcher and coordinator of a World Health Organization (WHO) working group focused on improving access to health services for people with disabilities.
Linamara served as Minister for the Rights of Persons with Disabilities in the State of São Paulo from 2008 to 2018, where he helped introduce national policies supporting the rights of more than 13 million people in Brazil living with some form of disability.
As part of the McKinsey Health Institute’s (MHI) Conversations on Health series, Linamara spoke with MHI Brazilian Ambassador Marcus Frank. The following is the conversation, edited and translated from Portuguese.
Markus Frank: Professor Linamara, what made you decide to specialize in the field of rehabilitation?
Linamara Battistella: I was an actress throughout my childhood and teenage years, playing children with disabilities. When I was an undergraduate in the 1970s, I had colleagues with disabilities. I come from a generation that was affected by polio in the 1950s. I definitely took these experiences into consideration when choosing my specialty. I also had some amazing professors. Many of my classmates became physiotherapists, doctors trained in the specialty of physical medicine and rehabilitation.
Markus Frank: What conditions are considered disabilities and how many people are affected worldwide?
Linamara Battistella: According to UN statistics, one in seven people has some kind of disability, which means that more than one billion people worldwide have some kind of disability. The traditional disabilities are visual impairment (either blindness or reduced vision, relying on optical aids to interact with the environment) and hearing impairment (which may require implants or hearing aids). Physical disabilities are of different types, from people who have lost a leg or become paralyzed in an accident to children born with physical or other disabilities. Illnesses such as strokes also cause important functional limitations. Apart from mental illnesses, there are intellectual disabilities. Intellectual disabilities involve people who have difficulties learning or communicating, but who can acquire the skills and conditions to develop properly within today’s social model. Thus, there are four areas of disability: mental or intellectual, physical, visual and hearing, which together account for about 13 million people.
There are different states of physical disability. There may be an amputee who, with the help of a prosthesis, can do everything you can. There are also temporary disabilities who recover. Some people have a stroke and are paralyzed for a while, but then they recover. This is called a temporary disability. For others, especially those with comorbidities, the stroke is more severe and they never recover fully. This is a permanent disability. We lump people with these disabilities, both temporary and permanent, together in the same group, but their medical needs and the investments they require are different.
Marcus Frank: How do we address accessibility for people with different degrees of disabilities?
Linamara Battistella: This question is not only interesting but also challenging. When we think about accessibility, we have to keep in mind at least seven aspects, the most important of which is mindset. If we can explain to everyone, with or without disabilities, that we live in the same world and have the right to the same products and services, we will build a better and more equitable society.
In Brazil, physical, architectural and environmental accessibility are required by law. But they are not always obvious. That’s where mindset matters. Think about it: when you invite someone to your home for dinner, you ask about allergies and preferred drinks. You don’t ask, for example, if they can cut their steak themselves. But this is also accessibility.
We have accessibility in equipment and communication. A blind person can be much more productive if given the right tools, such as a braille keyboard. A deaf person can understand everything we say if there is sign language interpretation or subtitles.
Finally, I have been focusing on digital accessibility for some time because the digital world should and can be fully inclusive.
Behind the screen, we are all equal. Digital accessibility not only promotes equal rights, but also creates opportunities to be together at all times. There are ways to measure the accessibility of a site. There are laws. [in Brazil] It’s about ensuring that sites and digital devices are accessible. This is something that we don’t use as often as we’d like, but it presents challenges for education, work and healthcare. Digital accessibility increases opportunities, exposes inequalities and creates the conditions for us to stay connected. This makes the world a better place.
Digital accessibility increases opportunities, exposes inequalities and creates the conditions for us to stay connected.
Markus Frank: We have always seen the Internet as a vehicle for social and economic inclusion, and we know that it has a very important role to play in including people with disabilities.
Linamara Battistella: Yes! Yes, with or without disabilities. It doesn’t matter if you have a disability or not. People with disabilities also have rights and can cooperate and contribute to building a more equal society.
Markus Frank: What you’re saying resonates with us at the McKinsey Health Institute. We think of health broadly, including physical, mental, social, and spiritual health. With this broad view of health and considering accessibility, what can we do to promote the overall health and well-being of people with disabilities?
Linamara Battistella: Happiness is the main product of modern society. We are constantly striving for happiness. How do we measure whether we can be happy? We measure it by belonging. If we belong to a group and feel part of that group, we come closer to complete happiness.
Marcus Frank: This is what the McKinsey Health Institute calls social health.
Linamara Battistella: Health is not the absence of disease. Health is a state of complete biological, psychological and social well-being. There is no other way to be part of the environment than to belong. This strategy must be strengthened as a key component of mental health.
Markus Frank: From your experience, how can individuals, businesses and governments work together more effectively to promote inclusion and accessibility?
Linamara Battistella: We need a legal framework that invests in the development of accessibility in some way and takes into account employees with disabilities. Society needs permanent regulations. We know all the traffic laws but we don’t always follow them. We are familiar with the rules of society and this also includes accepting people with disabilities. There is only one world and there must be a place for all of us in it. To be part of the group, we all need to express our concerns and fears. For this sense of belonging to be transmitted to manufacturing, service organizations, agribusinesses and universities, we need legal instruments that motivate companies to accept accessibility, for example, tax breaks for companies that accept accessibility and fines for those that don’t.
We can never leave anyone behind. We need everyone, and we must all be able to thrive in all environments.
Markus Frank: What new challenges has the pandemic created for accessibility that didn’t exist a few years ago that you need to keep in mind now as experts and leaders in the field?
Linamara Battistella: The pandemic has revealed unique aspects of our lives. The inability to leave the house, limited access to goods and services, and even difficulties in communicating with close family members were enough to make us realize that digital transformation and proximity are possible. People with and without disabilities have made use of remote services and digital health. Society has learned that it is not traffic or architectural barriers that prevent us from getting closer. On the contrary, we are constantly threatened by epidemics, violence and other elements beyond society’s control. We can get closer by other means. The digital world promotes the development of safe and friendly spaces that bring people together, because we are, once again, all the same behind the screen. We can take advantage of this and demonstrate our capabilities.
Markus Frank: It’s like breaking a paradigm.
Linamara Battistella: Yes, it broke the paradigm. At first it was limiting, but now it opens up new dimensions. For example, you can attend an event in New Zealand without leaving your desk. It’s time to use the digital world to do everything that you couldn’t do in the analog world.
Markus Frank: Tell us about your work as coordinator of the World Health Organization’s Accessibility Guidelines Group.
Linamara Battistella: Since 2012, I have been a member of a working group at the WHO that has been developing alternative ways to measure what is health, what is disease, what it means to be out of the productive world, and there is a much better indicator than age: the International Classification of Functioning, Disability and Health. [ICF].
The ICF framework expresses functionality in relation to lifespan. We are living longer, so we need to continue to function longer. It also looks at how we view our health care system. [For years] We thought that the main challenge was chronic non-communicable diseases. As people live longer, they also have more heart attacks and strokes. These are also infectious diseases that cause permanent disability. Now we know that both chronic non-communicable diseases and infectious diseases are a problem. So we need to develop a framework that includes drug treatments and physical measures, which are our main areas of research, so that affected people can be productive.
There are clear standards for the length of time off work due to disability, which changes production and represents a real cost to the country. When we were children, we often heard stories of people starting work at 15 and retiring at 49. Today, 60-year-olds have children, get married for the third time, start companies… Everything has changed. We produce throughout our lives.
Markus Frank: Age is not necessarily the metric that we should use, because many people are starting to work later in life and working longer, right?
Linamara Battistella: Yes. We need another indicator. In investigating these issues of quality of life, we found another variable that needs more attention: sedentary lifestyle. This may be the poison that is currently causing the most harm to humanity. As an indicator of health, we look at treatment strategies. When a patient is discharged from the hospital, their condition may be stable, but they are not cured. A real cure requires, along with clinical treatment, to adjust the patient’s functional capacity. Even if a stent is inserted after a heart attack and they are hemodynamically stable, their functional status needs to be improved to walk or climb stairs. This function is what keeps the patient healthy. Patients with more severe diseases, such as stroke, have limitations such as difficulty communicating, but we cannot just join their hands and return them to society as they are. That is why we help them communicate, resume functional movements and achieve maximum independence. Health today is measured not by the absence of disease, but by the degree of functional independence. Medication is only part of the treatment. Without function there is no health.
Markus Frank: Is there anything else you would like to talk about rehabilitation and accessibility for people with disabilities?
Linamara Battistella: Companies benefit from employing people with disabilities. Today’s technological advances are also thanks to them.
In Brazil, this affects a significant number of people: 13 million, or one in seven of the inhabitants. This is not only a social and humanitarian issue, but also a business issue. [People with disabilities] They are consumers. They buy clothes, drive cars, and travel. Companies [all over the world] Improving services for this demographic will benefit them too.