(*Note: My meeting with Eginaren Eginez was held in Spanish, and my Spanish comprehension is still relatively novice, so please excuse any unintended misunderstood elements from our conversation. Eginez also occasionally used the term “diversidad funcional” or “functional diversity” in describing disability as an innate part of the diverse spectrum of humanity. While I would typically use only the term disability to remain consistent and utilize the term that people with disabilities themselves have adopted, and that acknowledges the discrimination faced by people with disabilities in a disabling society, in this piece I will also use the term “functional diversity” in those contexts where Eginaren Eginez used the term.)
Founded in 1979 by the union of a group of motivated people with physical disabilities, Eginaren Eginez is a non-profit organization working for the equal human rights of people with disabilities in Álava, a province in the Basque Country region of northeast Spain. Eginez is an association run by and for people with disabilities, and fights for equal conditions and equal opportunities for disabled people in all aspects of life, including in employment, in education, in recreation and free time, in health care, and in accessibility within the built environment. They advocate for the inclusion of people with functional diversity in the social life of the community, to be able to socialize, go out, participate in hobbies, and enjoy those activities that contribute to a fun and social life, that most people without disabilities simply take for granted. In our meeting, Eginez explained that they were a politically-involved organization because to be a person with functional diversity one’s life is fundamentally political, and intertwined with politics and policies; however, Eginez is not a partisan organization. Importantly though, Eginez is not an association only for people with disabilities, but their work aims for unity, dignity, and equal treatment of all people. Recognizing intersectionality and the ways in which many elements of personal identity can increase risk of discrimination for many marginalized or minority people, Eginez is also a feminist-supporting organization, a LGBTQ+ supporting organization, and collaborates with other human rights associations to fight against all forms of discrimination or unequal treatment. For instance, Eginez is a fiercely feminist organization, and strongly advocates for the equal human rights and freedoms of women with disabilities, recognizing that women with disabilities are at elevated risk of sexual abuse and gender-based violence, while often not being fully included within the broader feminist movement (see this informative page from the Eginez website: https://www.eginez.org/las-mujeres-de-eginez-alzan-su-voz-en-el-25n-contra-las-violencias-machistas-y-por-sus-derechos/).
The situation and challenges in the Spanish Basque Country regarding disability rights and independent living are similar to many countries throughout Europe. There is no dedicated system for personal assistance, and for many individuals with disabilities, they have no alternatives to living in institutions or residential homes, or living at home with the support of their family. Without access to personal assistance, people with disabilities that need such support are stripped of their ability to live their lives on their terms. It is the mission of Eginaren Eginez to enable all people with functional diversity to have the option to live in their own home, independently, and not be confined to institutions. They believe, in the vein of the independent living movement, that it should be every person’s individual choice how they want to live, and equal options should be available to them. Eginez puts much emphasis on personal assistance in their work and advocacy, as it is a crucial pillar for unlocking independence and freedom for disabled people, but they also recognize that independent living is not only personal assistance, but also about equal access to education, work, recreation, and the built environment. Through Eginez’s advocacy work, the local government of Álava approved a decree enabling a restricted form of personal assistance; however, the decree has many limiting stipulations, such as too little money provided to properly cover assistant hours, and that assistants are required to have a variety of additional certifications, such as experience in social work or working with children, as well as medical certificates. These restrictions hinder people with disabilities to be able to find a personal assistant with all qualifications, even if their personal support needs do not require such certificates. Eginez is fighting to have payments provided directly to the person with disabilities themselves, as each person knows best what they need and want from an assistant, and they should have the choice and control over who they hire and what qualifications they need.
Eginaren Eginez is also working on a project in collaboration with an ally association in Álava of people with intellectual disabilities to promote independent living and de-institutionalization for individuals with cognitive and developmental disabilities. Eginez recognized that, from the founding of the independent living movement, the effort for independence and inclusion was especially targeted for people with physical disabilities; however, now organizations like Eginez, ENIL, and many other independent living associations are working to include those with intellectual and developmental disabilities, and consider and fight to liberate people with intellectual disabilities to choose and control the way they want to live, to the fullest extent they can. As part of their project, Eginez also hopes to break down harmful guardianship laws that can strip people with intellectual disabilities of their freedom and independence.
Images from the conference organized by Eginaren Eginez
Over the week that I visited Vitoria-Gasteiz in the heart of the Spanish Basque Country, Eginaren Eginez also organized a conference on disability rights and independent living, which focused on how to understand and utilize the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The CRPD is a landmark and hugely important UN convention, ratified by most countries around the world, that explicitly and thoroughly specifies the equal rights to independent living, employment, education, housing, recreation, and all other facets of life for people with disabilities. The conference involved multiple educational presentations on how the CRPD can be used as a powerful tool to fight for disability rights, but also the enormous gap that still exists between the rights that should be granted to disabled people on paper, and the true lived experience and exclusion of people with disabilities in actuality. We can all be allies to the independent living movement, though, by pointing out and criticizing moments or things we encounter that continue to discriminate against people with disabilities, such as inaccessible buildings or public transport, lack of representation of disabled people in the workplace, preservation of institutions that house people with disabilities and constrain their self-determination, and ableist language or attitudes.
Thank you Eginaren Eginez for an illuminating meeting and conference. I learned so much from my time in Vitoria-Gasteiz, and I will try to take these lessons forward and continue to strive to be an ally for the disability rights and independent living movement!
Check out more of Eginaren Eginez’s work and mission on their website: https://www.eginez.org/
Please consider supporting my fundraiser for the European Network on Independent Living (ENIL), which is doing incredible work advancing and fighting for the rights of people with disabilities across Europe, working to close segregating institutions, and liberate all disabled people to be able to live in the community and choose and control their own lives, and bring together the disability community to find shared power and strength in raising our collective voices and fighting for inclusion and equal participation of everyone. Link to the fundraiser: https://gofund.me/7d7230b1
When we are all free, then we can all thrive!
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