María José Tavira: "For mothers with children with disabilities, the administration is more exhausting than the caregiving."

BarcelonaFor five years, the Union of Mothers in Functional Diversity has been fighting for the rights of people with disabilities and their caregivers. The group—which brings together mothers and sisters from several generations—denounces systematic mistreatment by the administration due to bureaucracy and a underfunding of services and activitiesHowever, in the last five years they have earned the right to be direct interlocutors with the regional ministry and a major social entity.

Where did the idea of ​​meeting under the name of a union come from?

— It started outside schools, where mothers gather and share their problems, and later, thanks to social media and WhatsApp, it spread and now we're an organized group. We hold assemblies, meetings, and have working groups.

Do they feel mistreated by the administration and large third-sector entities?

— It's not a feeling, it's a fact. The abuse is systematic and regardless of our children's age, whether they are minors or adults, because nothing is covered up. Even, There are waiting lists to get a diagnosis For child development and early intervention centers (CDIAP) and a large part of the therapies, the public system also does not guarantee services.

Once a diagnosis has been made, where does the system fail?

— Everywhere. The inclusive education decree is systematically violated because there is no support. The underlying problem is the way disabilities are viewed, which makes the administration incredibly exhausting, even more so than providing care. The struggle with the administration is constant and occurs in every area. This is institutional mistreatment, I insist, but society also bears some responsibility.

What are we doing wrong as a society?

— Disability is seen as a problem. Wheelchairs are understood, but disruptive behaviors are not. It's also viewed through a lens of naive idealism, as if we're being done a favor by having our children included. But they are part of society, and therefore no one should have to make room for us, because they have the same right to exist and be present. We ask for rights, not favors, and this is directed at government agencies, but also at society as a whole.

But we have laws, services, and dependency laws that are 20 years old.

— The Dependency Law is testing our patience, okay? In Catalonia, we happen to have... the miracle of the MorenetaSince we can't find an explanation for why there are fewer people with the highest level of dependency, level III, here, but not levels II or I. We have complained to the Department of Social Rights because we estimate that half of the reviews when The children turn 18, they get a discountThis is the trend we are seeing.

What is the cost to families of losing a grade?

— Raising a child with a disability means paying for everything: over 500 euros for the diagnosis, often for school because they are usually sent to special education schools, for therapies that aren't cheap... These aren't extracurricular activities: these are children who need occupational therapy, rehabilitation, families who need specialized physiotherapists... They take out mortgages beyond their meansSome of us have to stop working, especially those without families, because you always have to be on alert for the school to call you and rush out to pick up your child.

In Catalonia there are more than 10,000 registered non-professional caregivers.

— Yes, and 87.7% are womenThey call them non-professionals, but I say these primary caregivers are quite professional. We're taxi drivers, psychologists, occupational therapists, because you learn from everything. Those who are registered contribute the minimum to Social Security, but they don't get paid. I pay in, yes, but how many hours do I work? We have to be on call 24 hours a day, without being able to rest, because the time my son is at school, I'm battling with the administration, doing activism.

The union also includes mothers over sixty who have been caring for others for years. Are there differences between their experiences and the stories of younger women?

— None. Those in their 60s and 70s are much more tired than those of us in our 40s, but the situation is the same. I read a while ago that the stress of mothers with children with disabilities is comparable to that of soldiers, because we always have to be on alert.

But there are laws, there is more aid, right?

— Everything looks good on paper. But reality is what it is. We should have breaks, time for our children to spend away from home so we can rest and continue caring for them, but when it comes down to it, there are few places available, and children are excluded for behavioral reasons. We don't have vacations, a moment to rest, because our children can't stay at a friend's house.

We were talking about women. Where are the fathers?

— In the union, there are women who are single by choice, and many others who are forced into it because when a diagnosis is made, the father runs away and abandons himself. We should look at what's going on behind the scenes. Why do they abandon their children when they can continue their lives normally without being stigmatized? This shows that we live in a patriarchal and violent society.

What does 2026 ask of the administration?

— We're not asking for anything; the time for begging is over. We claim and demand our rights because we are part of society. And the government is simply an administrator that survives thanks to our efforts to provide care 24/7. But because, from a capitalist perspective, our children aren't seen as productive members of society, there's no investment in them, and furthermore, they don't even get to vote.