Notes on Stuttering and Stigma in Somali Families

Americans With Disabilities Act of 1990 (ADA)
- A civil rights law prohibiting discrimination against individuals with disabilities.
- Defines a disability as:
  - A physical or mental impairment that substantially limits one or more major life activities.
  - A history or record of such an impairment.
  - Being perceived as having such an impairment.
Cultural Beliefs About Disability
- Some cultures view illnesses and disabilities as:
  - A manifestation of spirit.
  - A consequence of a family's past actions or missteps.
  - Part of a deity's plan, karma, or a curse.
Specific Context of Somalia
- Disability is equated with physical impairment or war/conflict injuries.
- Language disorders, stuttering, and learning difficulties are less acknowledged due to their invisible nature.
Cultural Attitudes Impacting Assessment
- Important to consider varying cultural beliefs around disability in assessments, evaluations, and treatment outcomes.
- Families from the same region may have different beliefs or practices.

Identify cultural attitudes regarding disabilities, focusing on the Somali community.
Plan evaluation practices mindful of multilingual families.
Understand the etiology of stuttering and its presentation in bilingual individuals.

Hamsa is a 9-year-old, third-grade student in an English-speaking school.
Family background:
- Refugees from Somalia.
- Lives in a community with few Somali families.
- Two other Somali families in school; Hamsa is the only Somali student in his third-grade class, which consists predominantly of White children.
Family structure:
- One older brother and two younger sisters.
- Communicates in both English and Somali with siblings.
Language exposure:
- Exposed to Somali since birth, learned English as a toddler upon moving to the United States.

Farrah (Hamsa's mother) reports concerns about Hamsa's speech:
- Limited knowledge of Somali, frequent word repetition.
- Communicates in single words in Somali and phrases in English.
- First noted repetition of words and sounds since age 2.
- Behavior included squeezing his face and holding sounds long, which has decreased, but he still repeats words and sounds “like 10 times in a row.”
- Notably, he does not stutter when reciting lines from the Qur'an.
Pediatrician's advice:
- Suggested focusing on “one language only” due to perceived confusion, which Farrah disagreed with.

SLP John contacted Farrah for observation permission.
Classroom Observation Results:
- Stuttering frequency noted between 7% and 9%.
- Secondary behaviors included hand shaking.
- Types of dysfluencies: repetitions of initial sounds, blocks, prolongations.
Dual Language Learning (DLL) Placement Tests:
- Hamsa's English skills were deemed proficient; he did not qualify for DLL services.
- Communicated in age-appropriate phrase lengths; followed complex directions and understood academic concepts.
- Described as shy and reluctant to participate orally by his teacher.
Observations from Hamsa's teacher included:
- Frequencies of holding sounds for prolonged periods (3–5 seconds).
- Physical behavior like waving his hands when speaking in groups.
- Increased stuttering during nervous, excited, or upset moments.

Farrah and Bashiir (Hamsa's father) declined interpreter services.
SLP scheduled a planning meeting, involving a Somali cultural liaison to assist with communication.
Notable during the meeting:
- Use of the word "disability" led to visible discomfort from Bashiir (clearing throat, shaking head).
- He expressed disinterest in discussing disabilities, preferring to focus on fixing Hamsa's speech.
- Bashiir shared a personal story regarding his uncle, who stuttered and faced stigma leading to isolation and dependency on charity.
- Bashiir believed leaving his uncle behind resulted in divine punishment affecting Hamsa's speech.

Farrah became emotional during discussions about the stigma of disabilities, indicating the weight of cultural perceptions on family dynamics and concerns about labeling.

The case of Hamsa illustrates the intersection of cultural beliefs, language acquisition, and the challenges faced in obtaining appropriate support for bilingual children exhibiting speech disorders.
It highlights the importance of cultural sensitivity and understanding in educational and therapeutic settings.