Inclusion and Belonging for Students With Albinism: A Parental Perspective

Introduction: Albinism is a genetic condition caused by a lack of pigment in the eyes, with some forms of albinism also affecting pigmentation in the hair and skin. Individuals with albinism experience some degree of visual impairment as well as hypopigmentation. Both visual impairment and physical appearance may contribute to students with albinism having differing experiences at school than their nondisabled peers. Methods: This exploratory research on parental perceptions was part of a larger qualitative study on inclusion and belonging for youths with albinism. Questionnaires provided information from a larger sample of parents, while three interviews provided a deeper narrative of parental perceptions. In total, 19 participants provided qualitative data for this study. Results: The data resulting from questionnaires and interviews revealed issues relating to vision and visual accommodations, including accessing print and technology, difficulty obtaining accommodations, and vision in group settings; sun protection; physical education and sport; being left out of activities; “looking different”; lack of awareness and representation; and increased need for parental and self-advocacy were related to exclusion and lack of belonging. Alternately, provision of accommodations, friends, and the specific actions of a teacher were associated with inclusion and belonging. Discussion: Inaccessible technology, sports equipment, and other learning materials, as well as time spent on acquiring sun protection, contributed to parental perceptions of both exclusion from academic work and from social time at school. Parents identified that better awareness of albinism and representation of people with albinism could serve to reduce these stigmas. Implications for Practitioners: Educators, administrators, and school systems can implement aspects of inclusive design that not only anticipate the needs of students with albinism, but recognize, respect, and respond to individual needs, goals, and situations.