Discussion Transcript: A daughter’s disease, a mother’s hope

Participants: Maggie, Erica, Angela, Peko, Rachel, Fanny

I’m very interested in this kind of issue about how to treat disorder people. So when I read this story, I also, I’m a woman, so I can feel the mother’s feeling. And I just wonder if I were a mother with a child, like this one, can I keep calm and become so strong to assist her child? I just wonder. So maybe, I also think that our social system in Taiwan, can our system to support this kind of family? Somehow our medicine system, we can discuss this kind of system.

I also think this article is interesting in this topic, “A daughter’s disease, a mother’s hope.” The theme is not in the article, but I think when the daughter have some special disease, and no hope to cure, it’s very hard for a mother, maybe we have so many things to discuss.

Erica, what do you think?

I think to be a mother is hard enough. And to be a single mother is even harder, and to have a sick child is even harder. So just like Fanny said, to put me in her shoes, I think I won’t know how to deal with such a case. Because I don’t have a stable job, and don’t have enough money, and no social support or gvt support. I think I would feel desperate. But the mom is so strong. I admire her. And I think what she did is not just to help her daughter, but she wants to help people who have the same situation, I think she is very brave.

I once saw a movie, the name is Lorenzo’s Oil. I think that mother is braver than this mother—

I think because the character in the movie has more money, and has more knowledge. But this mother is blue collar, and her job is to care for other people’s child. Sorry to interrupt.

—but I think the LO mother is also brave in the same situation.

After I reading this article, I think my interesting part is to show that she is a single mother living in public housing, it means she is poor, she has a daughter with a rare disease. She try her best to live and take care the daughter. But their real problem is the gvt problem. Because the mother cannot get enough social support to get stable work and enough salary to take care of her daughter. So the problem is not enough money and resources to study on this disease, so the mother cannot do anything for this daughter, and especially for the disease. And this is probably a society problem.

Angela, I think in the US, they would take care of this problem, from the—

You really misunderstand the US. In the US, being a single mother is a social crime. Being poor is a crime. No one will help you, least of all the gvt. Because if you dare to be a single mother, it means you’re definitely a Bad Mother. And that is a crime. Because you failed to keep a man, and you’re selfish to keep the child.
There’s this case, a woman, she has two sons, one is 13 and one is 15. The 15 year old got in trouble with the law. So she’s a Bad Mother. She can’t pay the fees for the kid’s jailing, so they put her in jail too. So how’s that going to help her? Then, they let her out of jail to collect her paycheck from her part-time job, which she can’t keep because she’s in jail, but she got the check from the previous month, well they took that, to pay for HER jail costs! So she still can’t pay her son’s jail costs, so they put her back in jail? What the hell? She’s in jail for being poor! Being poor is now a crime! So she’s a Bad Mother, and why? Because her son is in jail, and she’s in jail so she can’t take care of her other son, and because she’s too poor to take care of her children. I tell you, whose fault is this? It’s not the woman’s fault. It’s the fault of the gvt.
In the US, it’s a social crime to be a single mother, because everyone knows it’s the woman’s fault if the kids turn out bad. It’s not the father’s fault for leaving, that’s for sure!

I think in Asia, single women’s situation not so bad.

I think in the world, there’s no place to achieve a really equal position between men and women. It’s hard to reach an equal world, I think.

Do you think in our society people will have more sympathy or support for single mothers, do we have it or not?

I think not.

[everyone shakes head in agreement.]

From the working environment, not—

I think she can get support from friends, but from working environment, or gvt, no.

But what kind of support single mother need from our society? I think we should figure this out.

If you have a baby child, and you have to go out for work, you need someone to help you take care.

But even for working woman, our society doesn’t provide enough child-care system.

It’s expensive.

But recently I hear from my neighbour, she’s a two children, and we discussed this problem for working women. She said there’s some problem for our rules. I ask her why her corporation didn’t build a place for children caring, and she answered that, once their boss wanted to build a place, however, our rules for building the place, it can’t be underground. So no, for a corporation, they have a building, but they only have room for the day-care underground. It’s hard for them to search another place just for children caring. So they decided to do it underground, so our rules don’t allow it.

Your friend must work for a good company.

Yes, Chunghua Dien Shin.

But my question is, why could they only find a place underground for it? You say, they have to take care of costs, and everyone will agree with this, because we all live in a capatilist system, we think capitalist. But did you ever think about that this system, how it is that there are rich people and there are poor people? The poor people donate their labor and time to the rich people. That sounds silly to you, but think about it. Why does someone in Vietnam only work for enough money to pay their bread? If they had a choice? They give their labor and time, and they only get, say a dollar. Because the system makes it hard for them to get paid more. So the money the company saves means they can sell us cheaper things. So when we buy cheaper thing, we are receiving the donation of the laborers. What are they donating? The cost of their housing, the fact that they are sleeping in a dormitory and not a more expensive apartment, the cost of their cheaper food, they are donating their time so we can have cheap plastic things. Of course we also donate our time to more rich people, we are all in the system. It’s just harder to see it clearly in Taiwan right now because we get a lot, too. But we are donating our time.
So, the day care. If the women in the company had a choice, they’d go to a place they could have their children close by, right? But there isn’at anyone. So they donate their own cost of daycare to the company because they have no choice. So you think it’s reasonable that they say, “Well, we tried, but it’s too hard to comkply with the law.” You think, yeah, daycare is not a cost of doing business, so they’re right not to go to the extra expense. But they’re just outsourcing this cost to their employees, who pay it because they have no choice?

I think, our law doesn’t ask our company to build a day care for their employees. So if Chunghua Dien Shin wanted to, then it’s a good thing.

So are they really a good company, just because they ‘tried’?

Yes, it’s true, but they still participate in the system, of poor people subsidising the rich.

Yes, I never though that we subsidise the rich people with our time, and our time with our children. But I never thought they should take care of our children, because we exchange our time for them.

But under capitalist system—

No, but it’s a cost!

But we are just tools, we exchange fairly—

So we are undervalued.

So it’s that actually we’re third class or fourth class, depending on the level in the company. So they don’t exchange fair value. Take it or leave it. I can find someone else. So they won’t complain, and just take it. Some companies, yes.

I can’t agree with you more.

You are the moderator!

But I can’t agree more. So, what do you think?

I think the daughter is not at fault, and there’s many cases in Taiwan like this. I think become a mother will make a woman stronger.

Or weaker.

What do you mean?

She has to spend her time on her child, so she can’t change her situation. She spends all her time taking care of her dependent, so she has no time to make the situation better for herself and others. It’s easier to change things when you have no burden of dependence.

That’s what I want to discuss. She feels guilty because it’s a genetic disease.

So she feels responsible! But most mothers will feel guilty.

Because it’s genetic.

Of course it’s not her fault, but she’s still think it is.

Like autism. The mother will feel really guilty I know that this kind of disease not to related with gene problem. But most mothers will think it’s their fault. So as a mother they discover their children is their responsible for—

It’s women’s nature!

Nature or nurture?

You’re so cynical.

Please believe me that when I ask this kind of question, I am not being cynical. I am really being sincere, I am sincerely asking this question.
Because I think when you say ‘nature’ it’s cynical. You’re saying we can’t change. You’re saying we’re fucked. I say ‘really, there’s nothing to change about this? We’re stuck with this?’ So when I ask, ‘nature or nurture?’, I’m asking you, “Really? We really can’t change this?”

But the women are more responsible than the men.

It’s because we let the men off the hook.

So we women here are all responsible, since we’re the ones all in society.

There are some men in class, when we talk issues like this, they’re—

Uncomfortable?

Not, it’s that women are more than the men.

More what?

No, there are more women than men.

Yes. In traditional thinking, the men be told to earn the money, and they don’t have to clean the room or do some, I don’t know—housework.

So even in the in the western society, really?

But the movies!

Movies are dreams!

Yes, don’t fucking believe the movies!

Right, when you see men and women together in western movie, when I was a child I used to believe this is true.

[general laughter]

So actually I think this article has many place like things are interesting, because we talk about women, men, and so many things, like Chunghua Dien Shin. I never thought we’d talk about Chunghua Dien Shin because of this article.


That’s why I love this class.

But I want to know from you guys, you are so familiar with some kinds of medical science, from your aspect, how do you think about this situation?

Well, the major is, social welfare policy. So I can say the modern situation, what’s problem. I think it’s not her problem. So I think this is our society situation have to change, and we hope to create a more fair system, and gather people together to think about long-term care system. I know the gvt is planning to—

Our gvt?

—yes, our gvt and some NGO people discuss our system, the social insurance system, they hope to use this model to care for the disabled people, like elderly with disability, the children with disability. They hope to combine the medical and social system, but—

—I knew there would be a ‘but’ soon—

—but I think the social system cannot do everything well. If they cannot touch the real people’s needs—

They just use their thinking without real knowledge.

—they just use the productive method.

Productive?

Efficient. They want to take care more people with limited resource.

Get more people.

Yes, but they don’t think to expand the resource on the social care system. So their thinking have to change.

I think I am trained to not trust our gvt. Because I am middle age person, so I will think about my own retirement plan. The gvt said we can give the salary first, then I’ll have the money later, but I don’t think so.

Like in the US, Social Security is a pyramid scheme.

I have to pay 6% of my salary. For my future. But maybe I will die at 50!

So I have to take care of myself in my own way. I have to take care of my mother you know, I won’t trust the gvt.

They will know how to get our taxes, very efficiently. May is the tax season. They know how to collect it very efficiently, even though I just accidentally skipped one item, and just 2000 NT dollars, they called me, after one year!

They called you!

They called and said I skipped one item, and I should pay on time.

Because they have no money.

But it’s so efficiently! Rachel just said that we need to make the social system efficient. The tax system is so efficient!

They collect it efficiently, but they spend it sloppily.

But the home care worker, they are assigned to the elderly, they will count how many hours the elderly people need. If you, so they pay, the service payment for the hours…

You mean…

They only give you 16 hours per person per month. Once you use that up, you have to pay for the worker’s time yourself. So if there’s someone needs 24 hour care, they have to use private contractors. So they are separate from the home care system, because that are only part time care.

I have a question. Does the criteria for 24 hour care, and home care the same?

The doctor will decide, depending on the level of care.

So even if you don’t have time for it, if they decide you don’t have enough need, you have to find a way to get the carer for yourself.

Taipei city’s requirements for a home carer is?

They have to take classes and get certification.

But if the gvt hasn’t got enough personnel, they contract it out to private companies, who then charge the patient directly.

I think if we get old, without enough money, then it’s really terrible!

Yeah, my girlfriend says that if she gets sick when she gets old, she’d rather commit suicide then have to depend on someone else. To which I say, I can care for you! But she says she doesn’t want to depend on anyone, and I just think, but I want to keep her around!

Wow, I want to find someone like you.

Ha, well, I’m taken.

Well—

Besides, you need a boy, and for boys it’s harder to find good ones.

Yes, that made me think an example.

Example for this, or for find person take care of you!

No, but I think if you could find a person that wherever you go, they will go with you, that’s really lucky. I have a friend, she just go to abroad, and her husband go with her.

And give up his job?

Not give up, but—

A leave of absence, or sabbatical?

Not very clear, but I think he’s really nice, I think my friend is very lucky, and they are married.

We often hear that’s someone’s girlfriend go abroad for boyfriend, but we seldom hear the reverse case. Usually the boy asks the girl not to go, to stay, because the centre of the case is the boyfriend.

So why do they have all of the power and none of the responsibility?

It’s a kind of weird tradition, or a weird value. It’s very common in my family, or our society. It’s a habit.

I think it’s a culture.

Culture means we get used to something.

And make it formal.

Yes. Recently I look at the interaction between my father and mother. Sometimes my mother is right, but she says, “But your father thinks so, so let’s go with your father’s idea.” I just wonder why she doesn’t feel confident, and why doesn’t she make him follow her? Because she is right. But because once when they were young, she didn’t follow him, and he got angry. Just one time. And since then she follow him.

She has to ‘try to make the relationship work’. [cutting stomach gesture]
That’s the woman’s responsibility you know, not the man’s [/sarcasm]

They don’t want to break up the family, so they sacrifice themselves. In my family, the men don’t do any housework. I even have to wash my brother’s shoes!

Wow.

Good lord.

But me, I object, I say I am not my brother's mother.

But my mom said I was disobedient, I don’t behave the way the women should behave. So I became the black sheep. So my mother said it’s a pity I wasn’t born a man.

Yeah, I think so too, because men have a better deal!

Because it doesn’t matter they are more foolish or smart, they just have more power than women.

It’s a worldwide culture.

I had the wrong idea, I thought that the western culture—

That’s the advertising. You fell for the advertising.

You know, if you have a flush toilet, you’re rich. If you have your own money, your own house, and no dependents, you’re doing better than 80% of the women in the world. You have a flush toilet and a college education, and no dependents, you’re one of the free-est women in the world.

Article for 4/12 : A daughter's disease, a mother's hope

Article 4/12 will be discussed on Sunday April 12, at 3pm, at Goethe Cafe. Maggie is the moderator.

Goethe Cafe
Address: Roosevelt Road, Sec 3, Lane 283, No. 11
Tel: 02 2362 0060
Subway exit: Taipower Building Station exit 2

Article:
North Side mom searches for answers to the puzzle of her daughter's rare disorder
By Deborah L. Shelton Tribune reporter March 25, 2009


In her former job as a school bus attendant, LaSonya Thomas helped care for other people's disabled children. Now her life is consumed by the around-the-clock needs of her own severely ill daughter.

Thomas became a full-time caregiver last year for Maureeka Wilson, 15, when she was diagnosed with a rare disorder. Maureeka can no longer talk, walk, swallow or use the bathroom on her own.

Thomas escorts the 71-pound teenager to countless medical appointments. At home, she handles her daughter's tube feedings, administers medications every three hours and even tucks Maureeka into bed with her most nights, fearful the frail teen will choke to death without quick intervention.

All this leaves Thomas, a single mother living in a public housing development on Chicago's North Side, often feeling utterly alone in a search for treatment, despite being in a sprawling metropolis full of medical providers and top specialists.

That's because of the rareness of the disease with which Maureeka has been tentatively diagnosed—sepiapterin reductase deficiency, a pediatric neurotransmitter problem. Fewer than two dozen cases have been identified worldwide, and most diagnoses have been made around the Mediterranean region, said Dr. Jennifer Friedman, a neurologist at Rady Children's Hospital in San Diego who is considered an expert on pediatric neurotransmitter diseases.

The deficiency is one of an estimated 6,000 rare diseases that afflict about 25 million to 30 million Americans. Each is considered an orphan disease because so few people have it and little or no research is being done. A disease is considered rare if it affects fewer than 200,000 people in the U.S.

"I pray a lot," said Thomas, who talks regularly to a silent, largely unresponsive Maureeka. "I ask God to direct me, give me strength, help me to take it one day at a time."

Seeking answers to the puzzle of her daughter's disorder, Thomas has been searching for other families dealing with the deficiency. So far, she has located only one, in New Mexico. She has called organizations around the country looking for help.

It appears Maureeka has no idea of her mother's devotion. She stares blankly at the world with wide, dark eyes. Her disease has robbed her of an awareness of what goes on around her. On a recent day, she sat stiffly in a wheelchair across from a TV screen filled with static."

It's hard, it's real hard," said Thomas, sitting on a sofa in her sparsely furnished living room, her eyes fixed on her only daughter. "But I love my daughter, and it's not her fault."

Maureeka never walked or talked normally as a youngster, but she attended school and lived a relatively normal life. She was misdiagnosed with cerebral palsy when she was 1. When she was 13, she started having seizures and her condition suddenly worsened, prompting her doctors to rethink their diagnosis.

A special test was done on her spinal fluid to measure levels of neurotransmitters. Doctors determined that she had been born with a genetic defect that affected her body's ability to make neurotransmitters such as dopamine and serotonin. Neurotransmitters are chemicals that relay signals between neurons in the brain.

"We don't have the ability to reverse the genetic problem or to do gene therapy," said Dr. Sarah Elizabeth Zauber, Maureeka's physician and a neurologist at Rush University Medical Center who specializes in movement disorders. "Perhaps down the road as we learn about these diseases, that might be possible."

For now, those diagnosed with the disorder are treated with medication to try to restore their levels of neurotransmitters.But for Maureeka, the medication appears to have triggered periodic body movements that resemble seizures.

Unlike many parents who have sick children with more common and better understood disorders, Thomas has no idea what the future might hold. That adds to the stress.

"Nobody can give her the answer if [her daughter] is going to get better, get worse or stay like this," Zauber said. "Hopefully, with more testing we will know more."For now, Thomas would like to set up a support group and spur research.

"I do understand and accept that there is no cure for Maureeka's disease," Thomas said in her calm, quiet voice. "But I would like to find something that will make her life better."