Laura, with a 95% disability, advocates for personal assistance: "Goodwill doesn't cover our needs."

Laura Sánchez is 33 years old, lives in Madrid, and has been living with Arthrogryposis Multiplex Congenita since birth, a neuromuscular disorder characterized by joint stiffness, muscle contractures, and limited mobility . It varies in severity, and in her case, it's severe, as she uses a motorized wheelchair and performs activities such as using her cell phone or writing with her mouth.

Despite the fact that her illness severely limits her mobility, makes her highly dependent , and she is recognized as having a 95% disability , Laura has fought to lead a life like anyone else, successfully completing her studies, working, passing a competitive exam, and living an independent and fulfilling life with her husband.

But this would not be possible without a figure she considers key, without her personal assistant , who accompanies her fewer hours than she would need, but who is essential for Laura to be able to develop her life project, "since I was little they instilled in me that I had to study and earn a living on my own, although they were aware that it would be a little more difficult for me," she says.

An exemplary and demanding student

Like everything, she had to fight for it, since she's only had personal assistance for eight years. At school and high school, they did provide the support she needed to study, but at university, since it wasn't mandatory, " I didn't have third-party assistance ." And that's when the struggle began, which has never ended, to get someone to help me, for example, with turning a page, going to the bathroom, or getting a coffee... the basic things we all need on a daily basis, because that support wasn't provided at university.

But she didn't stop until she got it. She met with the principal, along with her parents, and they managed to get him to implement this position. "But we have to do everything this way, fighting to live equally with everyone else, not for privileges. We only ask for the support we need to be able to live our lives just like everyone else," she claims. " We don't want to depend on people's goodwill . On the one hand, because it's tiring, and on the other, because you don't feel you have the full right to ask for everything you need. Out of haste, you don't ask for the things you need. Goodwill is great, but it doesn't cover all our needs."

We only ask for the necessary support to be able to carry out our lives just like everyone else.

Thanks to this support figure, Laura not only successfully completed her studies, but also completed three more master's degrees and, shortly after, began working at Ilunion, "I spent 9 years working there in the third sector. Meanwhile, as the issue of disability really interested me, I began preparing for the State Management Body exam and passed in 2024. In November, I started working at the General Directorate for the Rights of People with Disabilities , and I think it's the best position I could have had in an exam; they've welcomed me very well, and I like the job," she says happily.

Currently, since 2017, she has the support of her assistant, who is with her 7 hours a day from Monday to Friday, a figure co-financed by the Community of Madrid and the European Funds "I managed to get into the program of the Independent Living Office of the Community of Madrid, which covers me more than what you get covered with the dependency aid, which is ridiculous because with 500 euros, tell me who you pay to take care of you in a month, it's ridiculous."

Even so, and feeling privileged because many people don't have access to this support, she believes it's insufficient to "not burden my husband and my family, but at least it allows me to have my job and a more or less decent life. Of course, at night and on holidays you manage, with your family, with your husband... and it shouldn't be like that, because a family relationship is damaged by having to attend to certain needs."

In fact, until 2017, she was supported by her parents, with whom she lived. “When I got the assistance, I became independent with the man who is now my husband, and he covers for me the rest of the time, although my family is always there when I need them if there's no assistance. But in the end, you have to have a circle behind you, because if one day my assistant calls me and says she's sick, I won't get out of bed if I don't have family support. Society doesn't realize how fundamental this figure is for us ,” she reiterates.

Therefore, given its importance, it would require a state pact to ensure it is guaranteed at the national level. As the Dependency Law currently stands, even with the reform that is supposed to give it greater importance, it depends on the autonomous community.

Laura would also give her much more recognition than she deserves, in every sense, " it's a very undervalued and underpaid job . It requires minimal training, but it comes with a lot of responsibility, a lot of work. We put our lives, our confidences, our private lives into them... I have to tell my assistant the PIN of my bank card, she has the keys to your house... we depend 100% on them ," she insists.

More physiotherapy, more assistants and fewer barriers

The right to personal assistance isn't Laura's only demand. Especially with disabilities like hers, physical therapy is also very necessary, which they don't have . Arthrogryposis Multiplex Congenita isn't a degenerative disease; it doesn't progress, and there's no treatment that treats or improves the condition beyond a few surgeries in childhood. However, regular physical therapy helps them gain some mobility and, above all, prevents the pain from getting worse. "Not being able to move much on our own makes us stiffer and worse, which is why it's so important," she explains.

If one day my assistant calls me and tells me she's sick, I won't get out of bed if I don't have family support.

However, it is only covered by public healthcare up to the age of 18. "For adults, only rehabilitation is covered, with the aim of 'curing' something, but in our case, since it's chronic and more of a maintenance issue, it's not covered; it has to be paid for privately or with the help of associations like Arthrogryposis multiplex congenita España." That is, if you don't have the means or an association nearby, it's very likely that the quality of life for people with this disease, and many similar ones, will be worse due to this lack of coverage.

Regarding the barriers that still exist in society that prevent people like her from living a full life, Laura, despite having serious mobility problems, believes that the social ones are much more limiting than the physical ones. "They are the worst and most difficult to overcome," she says, "because awareness cannot be fixed with a law or a course. In the end, being constantly told, 'Bah, you're not going to be able to do it,' 'How are you going to achieve that with what you have on you,' or not even hinting that you're capable of being happy..." she quips, "awareness is one of the biggest problems, both at the street level and at the political and business levels..."

Society in general, he believes, is still afraid to approach people with disabilities, something that can only be resolved with greater coexistence in all areas, "so that they don't see us as freaks, but as people, which is what we are, people with our hobbies, our jobs... everything the same as everyone else, we just need a little extra help, and if we all do our part, in the end everything is much easier," he asserts.

On a political level, he's also clear about what's needed: " They need to know that we're here , that we also contribute value to society, and that we need to have the same rights."

Fortunately, people with disabilities are increasingly less influenced by limiting messages and are asserting themselves, "We are here and we deserve them, because we don't ask for luxuries or privileges, only rights, and if we truly are an egalitarian and inclusive society, we must demonstrate it, make it a reality."