Disabled women escape confinement

A wheelchair keeps drawing stares. So does a pair of crutches with two stiff legs, swinging with each step forward. But sometimes, disabilities can be very much invisible. We're talking about women, many of whom have been kept hidden away in their homes for years, deprived of relationships, sex, motherhood... not to mention any form of participation in public life.

When they do achieve these things, men are always two steps ahead of them. These women have a dual agenda to fight their dual discrimination: to tear down the barrier they face as women with disabilities, and to fight for the public space mainly occupied by their disabled male counterparts. It is a question of recovering their role as women, which society has denied them, and then attaining equality with men. Or better yet, both things at once: there's no time to lose.

There are no official statistics, but the experts know that when a woman becomes disabled, after a car accident, for example, her husband often files for divorce before she even gets out of the hospital.

"If there are no children, it is assumed that there never will be. If there are, sometimes the mother distributes the indemnity she gets from her insurance company to avoid going to trial so she can keep them, because some judges don't think that a disabled woman can take care of her children." Maite Gallego supplies no details, or names, but she is very familiar with this sordid world. That's why she is sharing her story, which has a happy ending, for this report.

After years of bitter struggle, women like her are finally starting to see a few rays of light at the end of the tunnel. The wheelchair that Gallego uses did not destroy her marriage, which was enriched after overcoming the disability by the arrival of a little girl from China. Later, she will tell us about the trials and tribulations of the adoption process. Maite Gallego's life is an example of the existence disabled women are striving for, with the passing of the second Manifesto on the Rights of Women and Girls with Disabilities in the European Union, a tool for activists and policy-makers. This manifesto emerged in Spain, "where a lot of progress has been made in cross-cutting gender policies," says Ana Peláez, president of the women's commission of CERMI, the Spanish platform of disabled persons' organizations.

The manifesto was hatched in Spain, then, but it has prospered thanks to the support of the European Women's Lobby, a member of the European Disability Forum, which seeks an active, integrated, egalitarian role in society for disabled women. Peláez, who is blind, explains part of the problem: "Disabled women are not regarded as women, as if we were asexual beings. It's as if sexuality and maternity weren't for us, nor any representation in politics, unions or even in our own organizations."

In fact, while disabled persons' organizations are predominantly female - around 60 percent of their members are women - they run into a glass ceiling. No matter how high they want to go, they are stuck at the bottom. Thus, when Europe decides to make means of transportation accessible to the handicapped, they start with planes: "Which happens to be the mode of transportation that men use most. Why not start with city buses, which is what we use the most? That would be doing things on a gender basis," Peláez argues.

That's also why, when someone designs a watch for the blind that vibrates and sings, there are more men's models and they're extremely expensive, which means that blind men, rather than women, will be most likely to buy them.

It also explains why the crutches in the Social Security system's orthopedic catalogs are so heavy that only men could manage to get around on them.

But crutches and watches are the least of it. "The repression of these women has been tremendous," says Carme Riu, president of the Catalan association Dones No Estàndards (Nonstandard women). "They've been kept hidden away in their homes out of fear that they would end up pregnant, while the men were taken to the brothel. In residences for the disabled, sexual relations are prohibited, although this is a right to which even prison inmates are entitled."

Without mincing words, she continues: "The families of disabled men would try to find them a girlfriend, even though she was a little bit stupid, so he could have a family. We women were kept at home with our non-contributory pension and our siblings said that we had a bad temper. But what happens when the parents die? What's a single woman with a pension that she's never managed in her entire life supposed to do?"

The association that Riu represents takes these women out into the world and teaches them to get around on public transportation, to recover their self-esteem, to learn how to read and write and, whenever possible, enter the labor market. "Some of them hadn't been outside of their homes for 40 years," she recalls. "Women must all stick together in the struggle for equality. And we can all contribute a lot."

The most valuable help often comes in the form of an example: watching Maite Gallego go for a walk with her daughter, the little girl's hand holding the wheelchair as she looks for ramps so her mother can pass through, as if it were the most natural thing in the world. Like when she scolds the driver who has parked his car on the curb, blocking the sidewalk, and the man says: "Don't make me laugh; it's just five minutes!" And the girl fires back: "It's another one with the five-minute excuse, mommy."

But before reaching this situation of normalcy, Maite Gallego had to listen to all kinds of unpleasant things. When they decided to adopt in China, for example, the experts started asking questions to find out if they would be suitable parents; in other words, to determine if that woman in a wheelchair would be a suitable mother. What if the girl falls down? What if she gets sick? How are you going to give her a bath?

"When I got fed up I said to them: 'And where does it say that I'm the one who is going to bathe her?'" Maite's house is completely wheelchair-accessible and when they went to visit her, they understood and gave her the certificate of suitability needed to adopt a child. Then the little girl came.

"When she fell, she'd come crying to my wheelchair so I would cuddle her. And she never got away from me on the street because she knew she couldn't; it was her father who she got away from. They mature quickly and adapt to the circumstances. When she played with her dolls she would sit on a chair; it was her way of being the mom," says Gallego.

"The most negative image of disabled women is maternity. It is assumed they cannot fulfill their duty to take care of their children," says Gallego.

"But women are caregivers even when they are disabled," says Carme Riu.

Here is the dual discrimination. While the rest of women are fighting not to always be assigned the role of caregivers of children, of the elderly, or of the infirm, disabled women are still fighting to be allowed to look after their own kids.

When it comes to disabled persons, there is another side of the coin to the issue of care, because for someone who needs it, not getting that care is a form of violence, of abandonment, perhaps even torture.

For the disabled, domestic violence is a cage that is hard to escape. For instance, says Ana Peláez, there are women who might tell the family doctor about the abuse they receive. "But in order to enter the doctor's office, someone has to push their wheelchair. The privacy required for a confession is totally lost," she says.

In the world of healthcare, these individuals also face many limitations, such as the difficulty of getting up on a gynecological examination table, mammography equipment that isn't at the right height and changing areas that are too small for a wheelchair.

Yet those with mental and intellectual disabilities are even worse off. "Violence is always exercised against the weakest, and no one is weaker than a single, intellectually disabled mother," says Pilar Cid, from the women's department and the office of independent life of Afanias, an association that represents mentally disabled individuals and their families. "Not long ago, they were locked up in mental hospitals. It wasn't until the 1970s that they started to attain, little by little, the right to literacy, to a full education, to work."

In 2006 the United Nations adopted its convention on the rights of disabled people, "but the laws still haven't changed completely and customs still dictate," Cid explains. Despite what it says in the UN convention, an intellectually disabled woman usually gets her baby taken away from her until it is proven that she can take care of it like any other mother, rather than being given support, according to the United Nations.

Organizations such as Afanias complain that mothers with disabilities are invisible. "There are guides about domestic violence [and] sexuality is addressed... but there are no subsidies to educate people about maternity; disabled mothers simply don't exist in the eyes of the administration," says Cid.

"Sometimes they get smothered by affection, overprotection. In short, they're not seen as full-fledged people; it's hard to see them as having the same rights as everyone else. In Scandinavian countries, they are given all kinds of subsidies starting from the day they are born. But they don't come out of their homes; they're kept in a golden cage," says Cid.

Another cage is the rural world, where women are less visible than men and it is harder to get around: roads are often unpaved and houses have lots of stairs. If a mere case of depression is a taboo subject in villages, a serious mental problem is a terrible stigma. There, the dual discrimination can be triple, for being women, disabled, and living in a more closed-minded world, where many of the rights attained by their urban counterparts haven't sunk in yet.

"The basic problem in rural areas affects women in general, because the roles they carry out are still very much marked by the weight of tradition," says Jesús Casas, director of Desarrollo Sostenible del Medio Rural (Sustainable Development of the Rural Environment). "That's why this dual discrimination can be more pronounced than in the urban environment," he says.