In many ways, lack of information and/or misinformation is one of the biggest barriers to building relationships and families for people with disabilities. Under the guise of protectionism, people with disabilities are often left without information and supports they need to achieve autonomy. Many of the people we spoke with have been subject to protectionism in terms of their sexual lives because guardians, caregivers, and decision-makers presume they are too naive, too vulnerable, or too incapable of making decisions for themselves about sexuality, relationships, and reproduction. The stories below describe how some of the people we spoke with were explicitly given misinformation by their support networks, kept from engaging in one-on-one dates, or made to fear dating and relationships, all seemingly as a method for ‘protecting’ them.
Leanne Umanski is a 22-year-old woman who has Down’s Syndrome. She is her own guardian and lives with her parents and siblings in a large city. Leanne studies anthropology and modern classics at the local university, and she held a job at the residence there last summer performing housekeeping duties. She hopes to work as an administrative assistant in the future. Leanne was fully integrated in her Catholic school, and she had an aide in Grade 9. Leanne feels she was not ready for sexual education in middle school, and it seems to have been a very negative experience for her. She is currently in a relationship with her boyfriend of four years, and she described their plans to get married in a year. However, their relationship has been complicated by the influence Leanne’s parents exert over her knowledge surrounding sexuality. Leanne’s mom told her that she can date her boyfriend as long as she refrains from sex, and that if she has sex with her boyfriend (who also has Down’s Syndrome), their child will be born with Down’s Syndrome. Leanne feels that she is not ready for sex, and refuses her boyfriend’s suggestions to engage in sexual intimacy, such as sexting. Leanne is also constrained by a lack of autonomy. Her father controls her finances, and her parents chaperone her and her boyfriend throughout every date. Leanne says she only has one evening a week alone with her boyfriend, when they have theatre group together.
Shelby is a 34-year-old woman diagnosed with intellectual disabilities. She comes from a big family, and her mother acts as her guardian. She has been living in a group home for the last six years in a small town Southern Alberta town, and she enjoys her living arrangements. As a part of her day program, she volunteers in a hospital as a hairdresser. She attended special education class in a regular school, where she also took some sexual education classes. However, Shelby felt very uncomfortable with some of the material in the class, so her mother decided that she would no longer attend it. Later, Shelby attended other sexual education classes at her high school and in the group home where she lives, but does not recall learning about birth control. She believes that if she has sex it will definitely lead to pregnancy; this belief probably comes from her mother, who seems to be overprotective. Shelby’s story demonstrates how persons with disabilities are sometimes given false information; for example, she was told that she should not take birth control pills, as her dogs might think it is a treat and eat it. Shelby had her first sexual experience when she was 13 years old, and it was against her will. It does not seem that Shelby reported this assault. Shelby has been with her partner, who is also her first boyfriend, for two years. Her partner has Down’s syndrome, and they are not interested in sex. Shelby does not expect to marry, move in with, or have kids with her partner, and it seems that she does not have an opportunity to spend as much as time with him as she would like.
Emma is a 30-year-old woman who has learning disabilities and ADHD. She lives in a large city in Alberta with her mother, father, and older sister. Although her parents control her finances, Emma is her own guardian. Emma is very independent and is planning to move out on her own. She attended public school in regular classrooms, and participated in some sex education classes. After graduating, she also attended workshops and meetings about sex and relationships, which she found helpful. Emma has never been on a romantic date or in a relationship, and has never been intimate. The agency facilitated workshops that she attended mostly focused on the vulnerability of persons with disabilities; therefore, Emma is very concerned about her safety. Her parents have also expressed concern about her wellbeing and caution Emma that somebody might take advantage of her. As a result of this focus on risk, Emma is very careful when meeting new people and has some difficulty establishing trust. She feels that sometimes this over-carefulness prevents her from connecting with other people. In the future, she hopes to have a good relationship and a family of her own.