“It shows how ableist our society really is that it’s not obvious that everyone deserves to live independently… we would all be outraged if they would put people that were not disabled into institutions… for us it’s such a huge thing our independence, our lives, our livelihoods, where we live, who we live with… but somehow our society thinks it’s still ok for some people to live in institutions.”
Meet Rita Crespo Fernandez, human rights officer for the European Network on Independent Living (ENIL). Rita is from Galicia in the northwest of Spain, but now lives and works in Brussels, Belgium. Rita does not have a disability herself, but disability, and attitudes towards it, always played an important role in her life. As she says, “My brother is disabled… he was born with his disability, and he has multiple disabilities.” Rita’s brother faced segregation and prejudice, as Rita tells, “my brother lived through ‘special’ everything, special school, special swimming pool… I understand how discriminatory that is that he never had a moment in his life where he was with everyone else.” Rita sees how the situation in Spain has progressed in some ways over the past decades, but she also still sees many barriers and restrictive attitudes towards disability, “there is a willingness to change legislation and to be more inclusive… there’s been a switch towards more inclusive education, they’ve eliminated guardianship, there’s talks about de-institutionalization plans… but I see that there is still a huge institutional culture… My brother lives in an institution and I don’t think generally that it would be perceived that he could live anywhere else.” And simply providing bare-minimum inclusion without any additional support or attitude changes is not any better for people with disabilities, as Rita’s brother experienced, “My brother, actually did go for two years to an ‘inclusive school’, but I wouldn’t really call it inclusive… he was in the same building, but he was just left in the corner of the class.” Seeing how her brother was treated within society motivated Rita in choosing her career, “that was always a driver for me,” she says, “I really decided that’s what I want to do with my life during my studies… I became very interested in international law, in ethics, human rights, and I realized that’s what I wanted to take as a career path… of course disability was the first thing that came to my mind having the story of my family, and knowing how much it can impact a person’s life.”
Rita has now been working as an advocate for disability rights for multiple organizations, beginning as an intern at the small NGO in Spain that managed her brother’s special school, followed by an internship at UNESCO on bio-ethics. After completing her master’s in human rights in Paris, Rita began working as a trainee for Inclusion Europe in 2020. “It was not the best year to start working,” she says with a slight chuckle, “but this brought me to Brussels.” She then worked for Humanity and Inclusion, another organization in Brussels, working on development cooperation focused on disability. In April 2023, Rita began working for ENIL, and has been with the organization for a bit over a year. Rita is ENIL’s human rights officer, and as she tells, “my work is cut in half in terms of time, 50% in EU funds advocacy and the other half in international advocacy.” At the European level, her work especially focuses on de-institutionalization and cracking down on use of EU funds that continue to segregate or exclude people with disabilities, as she explains, “there are what is called cohesion funds from the EU that are often being invested into institutions… the reason this keeps happening is the EU understands that it is not their responsibility, but the Member States’, to control where the funds go… we think there is also a belief from the commission that these investments are acceptable… Our work is complaining when we find these violations, making it public first of all, letting people know this is happening… and we promote the idea that: ‘instead use the money somewhere else.’ We try to promote good practices, like personal assistance, for example.” On the international advocacy side, Rita works to promote independent living around the globe with their available resources, as she says, “ENIL has a goal to invest more into international development and humanitarian aid, because there is not much about independent living… it does not get properly financed… I can’t influence everyone around the world, and I can’t influence every policy… so I decided to focus on the care and support agenda, which the UN is giving more and more attention to, but we fear that the disability perspective is being excluded.”
Rita speaking on a panel and in front of EU parliament about independent living
As the European Network on Independent Living, ENIL has a unique role to act as a unifying voice and cohesive force in promoting independent living across Europe, and find ways to progress independence for people with disabilities across a diverse array of countries with different histories and cultures. This is not an easy task, as Rita explains, “It’s difficult, because we are talking about very different countries, and they come from very different places… there was a different culture in the Nordic countries that already started the independent living movement much before the rest, so there’s already some progress… there are the southern countries that may have a different culture when it comes to family… and there’s been a change with our aging societies that we’ve invested more into institutions… eastern countries that before were under soviet influence had these gigantic institutions… then you have countries that of course have suffered consequences of conflict, talking about Ukraine, which also impacts the lives of people… so we all come from different places.” The current political atmosphere across Europe also presents increased challenges in working to improve access, opportunities, and independence for people with disabilities. “I would say now there is backlash, especially when we talk about European Union countries… there’s been anti-migration laws that have limited for example hiring personal assistants… there’s been a rise in the far-right, which is not the most disability friendly parties, but also generally against social services… it’s not something that plays in our favor.” Rita sees that disability, and issues such as accessibility and inclusion, are being considered more in policy, but thinks we still have a long way to go to improve implementation and generate real positive attitude change towards people with disabilities. “From the European Commission side, I have a bit of a mixed opinion. I do think there’s been progress in legislation, that there is more attention… I think most people that have an important role there know they can’t make us shut up, so they invite us to speak and try to cooperate with us. But I’m not sure if there’s a lot of willingness to change, and I think that even people that do want things to change are confronted with the bureaucracy, are confronted with a parliament that has gone far-right… so the future right now is a bit difficult… I want to be optimistic, but at the same time I’m not sure if I can.”
Knowing the situation of her brother living in an institution, and now having worked for ENIL for over a year, independent living has become a deeply important theme in Rita’s life. “To me the question of choice is really important,” Rita says when discussing about what independent living means to her, “We all need to have options to make choices… if you only have two options, you don’t really have choice… so it’s important that we work towards people having enough options to make their own choices that they decide, that are not imposed.” It’s about the simple desire we all have to choose the life we want to live. As Rita says, “people can decide: ‘I want to live in the countryside, I want to have a chicken farm and live in nature and run naked across the fields.’ Or they can say, ‘I want to live in a big city and live the city life.’” Often, though, people with disabilities don’t get this fundamental freedom to choose their own life, “they are confronted with either, ‘you live in the institution,’ or ‘you stay at home with your family, with no support,’ or ‘you’re homeless.’ That’s not choice.” Rita also confided that her own perspective has changed a lot through her journey in disability advocacy and learning more about independent living, and she especially sees her brother and his life in a whole new light. “I’ve assumed a lot throughout my life about what my brother can and cannot do because of his disability,” She tells with honesty. “Like that he maybe couldn’t travel, or this kind of thing… I don’t know if he would want to, it’s up to him… but I think that we assume a lot that he cannot do and not necessarily what he could do if he had the chance… right now he lives in an institution. He does what he is told. He goes to the activities that are accessible to him. He doesn’t have the chance to explore other things, and to express his wants and desires.” Everyone deserves the freedom to choose and control their own lives, and the dignity to be treated as equal human beings.
Photo from ENIL’s Freedom Drive marching to parliament in support of disability rights
On having the opportunity to choose the things that make us happy, beyond her work, Rita shared about one particularly special hobby she loves. “I’ve done theater for a long time… and now with some friends we’ve started our own improv group.” Rita describes forming her improv troupe as a personal adventure for her, having to be spontaneous and put herself out there. “We learn together, and we manage it ourselves… it’s a lot of fun… and I do it in French. Not my native language, so that’s been difficult, but I love it.” To Rita, improv is about the joys of communal play and finding silliness and laughter in a moment separate from the challenges and hardships of the world. “It reminds me of when I was a child and you would play with friends,” she says. “You would create these worlds out of your imagination… so it’s also a bit like going back to feeling like a child.” Rita’s troupe is practicing often and preparing for their first live shows with their own unique style. “We’re getting ready,” she says smiling. “Hopefully next year.”
Rita enjoying the blissful freedom of improv
Thank you Rita for sharing your and your brother’s stories with me! I appreciate your extensive knowledge and experience in the field, and also your empathy, compassion, and determination sparked from your brother’s experience. As Rita eloquently touched on, the situation across Europe and around the world is leading to backsliding on disability rights, accessibility, and independent living. This is why the work of ENIL is so important because independent living for everyone benefits all of us, when we’re all able to live full self-determined lives, contribute positively to society, and live up to our own potential. This is the last week of my official fundraiser campaign for ENIL, so please consider donating if you haven’t already to support their impactful work fighting for the simple but universal right of everyone to live the way they want to live. Donate now: https://gofund.me/e2702b31