South African study of family responses to Ableism Part 1 of 2

In the blog What is Ableism?, the idea that ableism is like racism, feminism or sexism was introduced. Ableism is a very good tool for examining and understanding people's attitudes to disability. The following is a report of  a qualitative study of parents's responses to ableism in South Africa. The research is qualitative which means it looks at reasons, opinions and motivations behind people's decisions. In short, quantitative research is about numbers and statistics, whereas qualitative research is about the underlying feelings.

“It’s Our Job”: A Qualitative Study of Family Responses to Ableism, is a 2011 study of the experience of ableism in South Africa. For easier reading Theme 1: Support/Lack of Support and Theme 2: Inclusion/Exclusion will be described in part 1. Theme 3: Roles of Parents and Siblings will be described in part 2. 

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:

Parents discussed how they, the child with the disability, and the siblings addressed community perceptions about the child’s disability. Themes evolving from the interviews included: (a) support and lack of support, (b) inclusion and exclusion, and (c) the family members’ roles during their interactions with the community. Parents viewed their roles in the community as (a) advocating, (b) educating, (c) informing, (d) ignoring, and (e) hiding. The relationship between themes is presented, and the relationship between themes and parent empowerment is discussed as well as the ways in which the themes reflect underlying ableism.

Uganda: One family's fight with sickle-cell anemia

The experiences were analysed into three themes. It should be understood that when reading these comments that ableism generates both negative and positive effects, as say knowledge of racism results in positive discrimination to counteract negative discrimination. Certainly these experiences describe themes that are commonly experienced by all parents of disabled children:

Theme 1: Support/Lack of Support: Support and the lack of it was a prominent theme in all parent discussions. The DS group was unique in that they did not identify any instances of lack of support from the community. All other parent groups described both support and the lack of it across settings (extended family, community, professionals).
Extended family: When parents described support from extended family, they usually described either tangible support in the form of providing care for children or intangible support in the form understanding the child’s diagnosis or empathy towards the parents’ experiences. One mother of a two-year-old boy with CP described receiving particularly good support from her mother, although she acknowledged that support from family developed over time:

At first, I think a lot of my family members was --- well, one person was kind of negative about the whole situation and everybody else around me was so positive. They didn’t want her around because she was so negative about the situation. Now, she’s grown to the point where she is even more positive than everybody else. So, I have a really, really good support system…My mom is really supportive. Anytime I need anything because I’m in school at night and she keeps them at night.

Many parents described how grandparents and other extended family could be supportive just by taking an interest in the diagnosis. In some families, an extended family member’s knowledge of medical issues or involvement in the local chapter of a national organization (e.g. Down Syndrome Association) provided support. Taking an interest in how the parents and children were doing also provided support. For example, a mother of four children, two of whom ages seven and fifteen have ASD, explained:

I get a lot of support from my parents personally. My mother is always there for me, she calls me and she is up-to-date on the four kids but she’s always on my two [with autism]. It’s like how do you do it?

Lack of support from family usually consisted of not understanding the diagnosis or not being capable of handing the child’s medical or behavioral needs. There were many examples of this. One parent of a nine-year-old boy with SCD explained:

As far as my side of the family, I wouldn’t trust them with him. Because, when he got sick around my sister, she panicked. I wouldn’t say that she wouldn’t take care of him --- but she panicked and that scares me. Like I told her, if he’s in a crisis and you’re panicking, what is that doing for him? When you have a sick child, you can’t leave them alone with anybody.

Another prominent theme in lack of support involved family members blaming the parents for the child’s disability related health problems or behavior. One parent with an eight-year-old boy in an ASD group explained:

My mom would send me books on how to work with kids who are unruly. She’d send me all of these books about how I should be like getting him in line. She’s still kind of is on that wave length. And so are my husband’s parents. It’s kind of like, “Well, when our kids were young, they would never talk back like that or they would never try to get away with that.”

Community: Support from the community usually came from other parents and church members. Support involved willingness to understand the parent’s and child’s experience with the disorder, expressing concerns for the child when he/she wasn’t in church, or praying for the child when he/she was ill. One mother of a seventeen-year-old boy with SCD explained:

At our church, we have a solid membership and the people who are there, if they don’t see him coming, they’re very concerned. They say, “How is Mark feeling?”

Lack of support from the community was not as prominent of a theme as lack of support from family members or professionals. Perhaps, parents did not expect the same level of support from members of the community. However, parents in the SCD groups did note a particular lack of support coming from their places of employment. One mother of a nine-year-old boy explained that she couldn’t get support from her employer despite her effort to explain the problem:

I let her know, I let them know everything. Actually my aunt had brought him to my job. So they actually saw that he was not feeling well. Matter of fact, I had a social worker from St. Jude saying that my son was in the hospital and I still got fired.

Professionals: Parents described specific professionals that were supportive. One DS focus group spent a great deal of time discussing a special educator who was supportive. Other parents focused on particular practices of professionals that were helpful such as explaining the objectives of treatment and how family members could assist with treatment. One mother of a two-year-old boy in the DS group explained:

Professionals can help in the use of language, too, and involve the siblings. Like with the therapists we have coming to our house, it was so helpful. They would tell me, even if my older son and daughter were there, this is what you can do with John. When they come in from school and they’re there, (the therapists would say) “Let me show you what you can do with your baby brother. This is what you can do.” Involve them, which is good.

Many instances of professionals being unsupportive were described. The three most prominent themes of lack of support were: a) limited information given, b) lack of empathy or validation of the parents’ concerns, and c) limited knowledge of the child’s diagnosis or needs related to the diagnosis. Concerning limited information, one mother of a seventeen-year-old boy with CP explained: 

“We were not told that he had CP for quite a while. It was in his medical records. Nobody told us.”

The same mother described a scene in which a professional displayed a significant lack of empathy for her child:

Nathan is visually impaired. We discovered that when he was 6 months old by shear accident. We went to see a pediatric specialist, one of the best in the city. After his examination, he walked to the doorway and stood there and did not even come into the room and said there’s nothing there. His exact words were, “There will never be anything there. He will never be as good as legally blind. His vision will never be as good as legally blind.” That meant it’s going to be worse than legally blind. He turned around and walked out and said, “I will see you in 6 months.”

Many parents gave examples of professionals who were not familiar with how to care for their child or service systems not set up for their child, but some particularly poignant examples came from the SCD groups. One mother of a two-year-old girl explained:

One day my baby went to [the children’s hospital]. They always said whenever you go to the emergency room tell them your baby is a sickle cell patient. It didn’t do any good. We still sat out there and waited. We still had to wait. One day my baby was throwing up and I told them that she was a sickle cell patient. So, we had to wait right back out (in the waiting room) until they had a room for her. Then, I said, “Why do they tell us to announce the baby has sickle cell when we still have to wait in the waiting room. If this is a crisis, why would you have to wait and then they told us they would see our children (right away)?” It didn’t do any good. We still have to wait. Then, we stay in a room. They’re like, “Are you alright?” I’m trying because she’s sick and then they act like she’s just a regular patient.

Theme 2: Inclusion/Exclusion: Parents in all diagnostic groups noted instances of both inclusion and exclusion of their child with a disability or of their entire family. Discussions about inclusion and exclusion did not include interactions with professionals, so only extended family and community settings will be discussed here. Comments about inclusion and exclusion suggested that the concepts exist on a continuum. Parents noted instances of full inclusion and exclusion. At the same time, they also discussed situations, particularly with the community, in which they were making steps towards inclusion.
Extended Family: With extended family, inclusion usually meant including the child in the larger family activities or seeing the child as “just one of the kids.” A father of a six-year-old boy with DS explained:

I think my parents and my wife’s parents – I can’t see that they do anything different with them than they do with any other. All of Katie’s sisters live in town and so when we’re together we have this huge group of people and James is just one of the gang, just one of the family.

Exclusion frequently came in the form of not wanting the child with the disability around the family or discouraging the idea of inclusion of the child in the community. A mother of an eight-year-old boy with CP explained:

When I first told my family that Tyrone had cerebral palsy, my aunt said, “Why don’t you just leave him at home?” When she said that, it made me so mad I almost hit her. How you just going to leave? How you just going to put him back, if it was you what would you say? You would want to see the sun, you would want to feel the breeze. You want to go outside. You would want to see the birds, or whatever. Don’t you think he wants to do that, too?

Community: When parents described inclusion in the schools, church, or neighborhood, they usually described the child with a disability being accepted as just one of the group, just one of the kids in the school or neighborhood. A father of a four-year-old girl with CP explained, “Our church loves her. Good grief, everybody loves her at church.”
Inclusion was also described as something that the family as a whole had to work towards. For example, the mother of a sixteen-year-old boy in the SCD group explained how she worked towards inclusion by giving people information:

Once we got the information to them, then they could understand (sickle cell) wasn’t something that could be helped and it wasn’t something that they could catch from him. Knowledge of spreading it, trying to help someone to understand that it was not a disease, that it’s inherited and that’s it.

Inclusion was also described as something that improves over time because laws have changed, buildings are more accessible, and because people came to know and accept their child with a disability. A mother of a seventeen-year-old boy with CP explained how inclusion has improved:

Yeah, things were tough then. There were very few places you could take him to eat. For example, it was very hard to get him inside a lot of restaurants. There was no such thing as public transportation. So, all things have gotten easier over time.

Despite the improvements parents saw in inclusion, many examples of exclusion were still given. A mother of a twelve-year-old boy with ASD explained, “We’ve never found a church that was very welcoming.” Parents in the DS and SCD groups described instances in which other children teased the child. A particularly poignant example of exclusion was given by a mother of an eleven-year-old girl with CP describing a scene in which she was tube feeding her daughter in the food court of a local mall:

If I’m tube feeding her, people are looking and I’m like, she has to eat. We’re sitting in the food court and I had a lady to ask me “Could you please go feed her somewhere else?” I said, “No. Could you go eat in the bathroom? Do you want to go eat your lunch in the bathroom?” She’s like, “No, ma’am.” Then I’m not going to take her to the bathroom.

Theme 3: Roles of Parents and Siblings, will be described in the next part of this report...