South African study of family responses to Ableism Part 2 of 2

This blog post continues the description  of the 2011 qualitative study “It’s Our Job”: A Qualitative Study of Family Responses to Ableism. It begins at Theme 3: Roles of Parents and Siblings. Parents explain how educating, advocating and informing about their child's disability is empowering for both the parent and the child. Whilst hiding and ignoring, maintaining the ableist status quo, is disempowering.

Theme 1: Support/Lack of Support and Theme 2: Inclusion/Exclusion have been described in South African study of family responses to Ableism Part 1 of 2. 

Imran Buuza being fed by his father Hakeem Buuza using a syringe through the tube inserted in his nose.

To recap, this research outlines the experience of 45 parents of children with autism spectrum disorder (ASD), cerebral palsy (CP), Down's syndrome (DS), and sickle cell disease (SCD) who participated in eight focus groups. The parents experiences were divided into 3 themes. The blog continues from theme 3:

Theme 3: Roles of Parents and Siblings: As parents responded to questions about support and the community, the investigators noted an overarching theme related to how parents react when faced with exclusion and lack of support. This theme was that family members have a job to do in helping the child interact with the community and gain more access and support. For example, in talking about advocacy within the schools, the mother of a twelve-year-old boy said, “It’s our job as a parent.” A mother of a ten-year-old boy with DS noted that when it came to getting typically developing children to play with her son, it was “a lot of work as a parent.” Finally, a mother of an eleven-year-old boy with ASD explained that she told her oldest daughter, “You’ve done an excellent job” with regards to helping his brother learn to interact with others.
We hypothesize that family members did these “jobs” in response to dealing with lack of support and exclusion. When parents were confronted with situations that involved exclusion, discrimination, and a lack of support, they had a choice point in which they could respond in ways that were empowering for themselves and their family members or respond in ways that were disempowering and maintained the status quo of an ableist society. As we examined these roles, we noted that they existed on a continuum. Three of the roles (i.e., advocating, educating, and informing) appeared to empower both the parent and the child with the disability, and two of the roles (ignoring and hiding) were disempowering and supported the status quo of an ableist society as well as the parents own internalized ableism...
Advocating: Advocating involved seeking to improve the environment in which the child and the family lived or improve the services that the child received. All diagnostic groups described advocacy, and parents typically described advocacy as something that happened in the schools. Advocacy is needed when school staff do not fully understand the diagnosis and accommodations required. A mother of a five-year-old girl with SCD described a situation in which she had to meet with the school to describe her child’s needs: 

“Sometimes she’ll be tired and when she’s tired, she’ll go to sleep. She won’t play or participate with other kids sometimes. She will want to go to sleep. So we had a meeting about that.”

Advocating in the schools as well as with health care professionals took place when parents did not believe their child was receiving the best services. Parents described the need to be “pushy” with professionals. A mother of an eight-year-old boy with CP explained that she had to be pushy in order to “find out what’s wrong with [her] baby.’ A foster mother of a ten-year-old boy with ASD described an encounter during school registration in which persistence and advocacy were required:

I was registering them at school. We went over to Carter [Elementary]. They didn’t want D.J. I sat there for 2 hours. I said, “The Board says this is a good school for him. His doctor said this is an extremely good school.” And they said, “Oh no, you’re supposed to go to Greenhill. I said, “Oh, no. Greenhill is right down the street from … They said Carter is a good school.” So, I sat there for 2 hours. I had to go back 3 times and finally she said, “You don’t have enough information to go to this school.” I said, “Okay, fine.” Then, we went back. They said, “We stopped registering after 12:00.” Then I go back and the principal says, “Well, how are you doing?” So I said, “So we meet again.” I said, “This is my struggle and I keep trying to register him in school.” He started laughing. I said, “I have been here three times, trying to register my son in school, you know. I am persistent. I am not going to give up.”

Much of the advocacy was for the child in the family, yet parents also described ways in which the whole family took part in advocating for social change. This advocacy involved trying to improve the lives of all people with disabilities or all people with a given diagnosis. For example, parents in the DS focus groups talked about their involvement in the Down Syndrome Association and participating in the Buddy Walk.
Educating: Educating involved enhancing knowledge about the child’s disorder, his or her behaviors, or his or her health needs related to the disorder. Educating was the most frequently mentioned role and was mentioned across all settings with educating more frequently occurring with professionals and the community than with extended family.
Educating extended family members often meant simply getting them more information about the child’s diagnosis. A father of a six-year-old boy with DS described as a suggestion to other parents how one might involve grandparents more in learning about the diagnosis:

To me, what I would pass on to somebody would be to educate your parents and your in-laws as you were being educated. Don’t leave them out, because they are going to feel left out anyway because they are not right there all the time. And they are going to feel awkward, because they are not really sure what to expect. They don’t want to make a big deal out of it, but it’s a big deal. But educate them as whatever you’re learning.

A mother of a sixteen-year-old boy with SCD explained in a similar way the difficulty that she had getting her family to understand the child’s diagnosis and the steps she took to help them understand:

Trying to help someone to understand it is not a disease, that it’s inherited and that’s it. My husband’s side of the family, they still think that it’s a disease. I even brought to them some information from [the children’s hospital], a booklet so they can read.

Parents discussed the ways they would educate the community through answering questions. In particular, parents described educating peers of their child and their parents. For a mother of a nine-year-old boy with ASD, this meant breaking down ASD into understandable pieces:

At first, I would answer or tell them that he had autism. But not only do other 4 or 5 year old children not know what that means but the parents often did not even understand that nor did it help. So I had to break it down to, you know, “He has a hard time making friends” or “He doesn’t talk very well but he appreciates you trying.”

There was a great deal of discussion about educating health and school professionals about their child’s diagnosis. While discussing this role, many parents pointed out that it shouldn’t be their job to educate professionals. Yet, parents frequently found that professionals were not knowledgeable enough to provide adequate services. Two mothers in first SCD group discussed:

Parent 2: I had an experience with the school. They are very uneducated about sickle cell. They always think that when he says that he hurts or whatever he doesn’t want to be doing something. “Even if his toe hurts,” I said, “If he says that he is in pain, you call me. Whether he’s faking it or not, I don’t take chances.” Teachers at school are really not educated.Parent 5: You just write (504 plans) down but they don’t actually look at them or ask any questions them about it. It’s our job as a parent to get in touch with the school. The parents basically have to educate them.

 A mother of a two-year-old boy with DS described a scene in which she had to step in and teach the therapist about appropriate language to use when discussing a child with an intellectual disability. She explained:

We had just one issue with one therapist. The therapist who comes didn’t have good use of language. I didn’t like it. The way we solved it was I just had to talk to her. The day she used, “Dumb,” I thought oh no. I looked at her and said, “We have to talk.” As soon as she finished, I followed her. I said, “Look”, with tears in my eyes, I said, “You broke my heart today. You’re doing a great job. But, right in front of my daughter, you used that word. I don’t like that.”

Informing: While there was much emphasis placed on educating, we also identified a less involved role of informing about the diagnosis. When parents informed, they simply told others about the child’s diagnosis. Informing was a strategy used less frequently than educating and primarily identified in the ASD and DS groups. Parents carried out informing with the hope that information would lead to acceptance. For some parents, informing people was a part of naming and accepting the child’s disability. For example, two parents in the second ASD group discussed how they use informing to help community members and friends become more comfortable and accept their child:

Mother 3: With the haircutting, it’s the same thing. I took my son and I said, “My son is autistic, so he might squirm, and do this and this.” They take their time and go slow with him. It goes smoothly.Mother 1: I think it’s easier for them, too, if we tell them. The other person, they will be compassionate towards the child. That’s what I tried to tell one of my friends. Her child is three and I’m the only person that she has left that child with. And that was only one time. I mean I had to convince her to do it. She’s not comfortable with it. First, she came out and told me, “I’m not comfortable with that word; I am not comfortable with the word autism.” So, I have to be more careful about that and she said, “Some of the other mothers …” I said, “You know, I’m not ashamed of my two children with autism. Why should I not say autism? I mean that’s what it is.”

Ignoring: Parents used ignoring when they decided to pay no attention to the unhelpful or negative comments made by people in the community. Ignoring was a strategy only mentioned by the parents in the DS and ASD groups and with one exception, only used in interactions with community members. Here is an example of how, in response to the facilitator’s question about situations in public, several parents in the first ASD group described how they dealt with stares and comments by people in the community:

Facilitator: If people say negative things about your child, how do you handle that and how do you handle that with the sibling?Mother 2: It depends if someone is out in public or if it’s a family member, it’s handled two different ways. If it’s somebody in public, if I can I just ignore it.Father 1: Ignore it.Mother 2: And, you can always, on the side, say (to the sibling) they just don’t understand or they’re just not being very nice. You can say something like that. But as far as family, that’s a whole different thing, you know.Mother 5: With family, you have to keep encountering them.

Hiding: Parents used hiding when they decided not to tell people in the community or the extended family about the child’s diagnosis. Parents of children with CP did not choose to hide most likely due to the physical nature of the disability. Hiding was not described in interactions with professionals and infrequently in interactions with extended family. Like ignoring, it is probably not successful to hide from people you have to encounter over and over again.
A few parents chose to hide the diagnosis from the extended family. In response to the facilitator’s question about how do you talk to your relatives about ASD, a mother of three-year-old twin girls, one with autism answered, “Good question since I have not really told my parents. [Laughter from the group] Yes, how do you do that?” Even though this parent reported that she had never told the grandparents, it came up later in the discussion that the grandmother was not comfortable providing care for the child with ASD. So, the attempts to hide were not entirely effective.
When parents described attempts to hide the child’s diagnosis from the community as with extended family, they often explained that the strategy was not successful. A mother of a ten-year-old boy with DS described how she hid the diagnosis from her son’s Boy Scout troop but later realized that hiding was not the best plan because the child’s friends need the opportunity to learn about DS:

When we did the Buddy Walk this year and all the kids came, his Boy Scout troop came, and they were all like--they thought that it was like cancer. “Oh, my gosh, James has got, what does that mean, is he going to die?” All this stuff kind of surfaced. I thought I’ve done a terrible job in letting these kids know what that is but I never really thought it was a big deal. And I thought it was better just to kind of to never make a big deal of it. But it was also good in another way that they knew what that meant. Because the kids are going to develop and they are going to grow older. And someday they need to know what that means.

Parents in the SCD group discussed the need to hide their child’s diagnosis from their employers for fear that they would not be hired or lose a job if information about the child’s diagnosis was known. A mother of a five-year-old girl explained:

Sometimes when you fill out application, you really want to tell that you have a child with sickle cell. But it’s not really good because they won’t hire you because they need you there. Missing work, you know you need to tell them. But in another way, it’s bad to tell them. Because they will be like, well, she’s going to be taking off work and she is going to be another problem. She going to be coming around saying her child has to go to the hospital.

The over all conclusions of the study were:

The  present analysis adds to our understanding of family member experiences of ableism. The parents in this study had a keen awareness of and sensitivity to the ways in which their children experienced disability-related oppression, and they experienced it directly along with their children. The parents had a stake in creating a more inclusive and tolerant community environment as it would benefit both themselves and their children. As a result, parents engaged in activities aimed at making the world a better place for themselves and their children. This study suggests that the disability community should view parents as potential allies in the fight against ableism.

Ableism is seeing the world from one point of view, that of the non disabled person. That attitude becomes the predominant way of viewing the world. Furthermore, through habit a status quo of ignorance is maintained. Ableism then becomes a useful tool for understanding attitudes towards disabled people and of understanding the attitudes of parents and professionals. Ableism can be used to understand both the positive and the negative discrimination that disabled people and their families face. In this study, the ableist standpoint with understand the feelings of parents towards their disabled children in daily life. Understanding the world from the ableist standpoint is a useful tool because it helps forming impartial judgments.