Self-Advocates Are Speaking Up About Having a Sweetie

In the fall of 2011, Self-Advocates Becoming Empowered collaborated with seven self-advocacy organizations to run focus forums with 10 to 30 peer leaders with developmental disabilities. Here are their responses on the topic of intimate relationships:

People First of Alabama:

What kinds of messages did you get about sex when you were growing up?

  • Be careful—make sure it is the right person
  • Wait until marriage
  • Parents need to realize we still have those feelings and not ignore the topic
  • Use  protection
  • Wait until you are more mature
  • Don’t have sex with relatives

Do you get the support you need to have relationships?

  • Seven people said Yes from co-workers, friends and family
  • Seven people said No and that they get a lot of negativity against marriage


People First of Arizona

What kind of messages did you get about sex when you were growing up?

  • None, nothing from parents
  • Got sex education from school, but it was too late. I was already abused
  • My mom was very open and explained sex to me and did not keep things from me because I had a disability
  • Not supposed to know
  • Have to be married
  • If you hold hands, you get pregnant
  • If you are lucky, someone will marry you
  • Kids will ruin your life
  • Don’t touch it or it’ll fall off
  • Growing up, I did not really get a lot of messages directed toward me about sex. This could be because people looked at the chair first and concluded that I was incapable of sex or showing feelings.

Do you get the support you need to have relationships?

  • No
  • My family did not give me encouragement to have boyfriends
  • I had crushed and kept them secret
  • I was older when I had my first boyfriend and was taken advantage
  • My parent were not good role models for a healthy relationship
  • I was a late bloomer
  • In 3rd grade, my first big crush told me he could not act like he liked me in front of his friends because I was not popular and walked funny and in special education


People First of Georgia

What kind of messages did you get about sex when you were growing up?

  • Don’t do it!
  • People with disabilities can’t have sex
  • One person we know didn’t find out that she could have sex until she was 40 years old. By then, she felt she’d been robbed
  • We are easy targets and can be taken advantage of
  • People with disabilities can’t have children
  • People question how people with disabilities can be intimate
  • If we have a baby, it will get taken away from us

Do you get the support you need to have relationships?

  • People do not feel comfortable supporting that, particularly sex
  • Yes, from our peers
  • The wheelchair scares people off
  • Disability scares people off
  • A lot of people with acquired disabilities won’t date other people with disabilities
  • Confidentiality is an issue. My mom recently sat outside my door listening to what I was telling my attendant.
  • I didn’t get enough privacy when I lived with my mom. Now that I live with my boyfriend, I do.
  • I don’t get enough privacy because of my service providers
  • My family doesn’t respect my privacy
  • I got to spend time alone with someone when I had a girlfriend who had her own place


Montana Youth Opening Doors Through Advocacy

What kind of messages did you get about sex when you were growing up?

    From our parents…

  • It is better not to kiss because it might lead to something else.
  • Watch out for men if you are going out for a walk and if you travel overseas. They may take advantage of you.
  • Wait to have sex until you are married.
  • Any position other than the missionary position is sinful. Oral sex is sinful.
  • Heterosexual, monogamous, married relationships are the only socially acceptable and pure relationships to have. The only relationships in which sex can take place.

    From our peers…

  • You are not that cute, you are too innocent, or you’re that girl a guy should walk away from and never consider a romantic partner.
  • If you say something that shows you also think about sex on occasion, someone might say, “Wow, you just don’t seem like that kind of person.”
  • Sometimes a cute boy will laugh at or avoid you if he finds out you have a crush on him.
  • You are expected to take what you can get and scrape the bottom of the barrel because no one wants someone with a body that is diseased, weird, or acts differently.
  • I have never talked about it with anyone
  • Growing up my messages about sex came mostly from my peers, TV, and a little bit from my schools.

Do you get the support you need to have relationships?

  • I don’t really get the support I need, but it’s not because of others.  It’s more of a personal problem. I don’t give myself the support I need to be confident in relationships.
  • I’m not very good at asking for support/help from others, but when I’ve needed support I’ve found it is there.
  • Not at all and there is a reason why I am still single. The role society placed on me is men are typically ashamed to be romantic towards a woman with a disability.
  •  I have never been in a relationship
  • Ye, my friend gives me advice and I can talk to my mom and my second mom about it.
  • I am now 26 years old and passing my prime so I don’t expect to, I will probably remain single my entire life. This involuntary celibate status is a source of irritation and sorrow, but I am protected by a great amount of self-respect and dignity. I would never lower myself into promiscuity or compromise with a poor match as a short term solution to loneliness.
  • No, I am not allowed to date yet. I would like to though.
  • No, life or work always seems to be in the way.  
  • No- my friend says that I should not spend time alone with my boyfriend. And if we do, we have to set the timer and we can kiss or hang out for the amount of time on the timer until it goes off, but it’s not enough.


Our Voices Count, Too Self-Advocacy Council of South Carolina

What kind of messages did you get about sex when you were growing up?

  • When I was 15 years old, my mom started talking to me about sex.
  • I read magazine that have articles that I can understand.
  • My parents talked about puberty. My mother really tried to help me in the area.  Now that I look back, she did do a good job.
  • I have learned everything on my own.
  • Be careful about what you are doing. And be sure to ask the person how many people they’ve been with.
  • I did not have any information on sex growing up because my parents did not talk about it.

Do you get the support you need to have relationships?

  • There is no real support because remember I can’t take care of myself.
  • It depends on your setting. But, I really do not have any freedom.  I feel like someone is always watching over me. I certainly don’t get a chance to spend time alone with anyone because there is no freedom in my current setting.
  • I do have supports with my relationships.  I feel really blessed to be able to experience life.
  • My life is good because I have my own place and I can enjoy my dates and friends when I want to. It is the good life when people believe and you can live.
  • I really don’t get support from anyone when it comes to a relationship. That would include the people who are around me and the person I could be involved with.
  • My life is pretty good without the headaches of a relationship at this time.  I kind of like that way, right now. There is a lot of attention that you have to put into the relationship and I only have time to dedicate to my children.
  • I don’t have much time alone because my mom is always watching me when I date.  If she is not in the room, she is nearby.
  • There is not support from the service providers; things are treated ice cold when someone may want to be more involved.
  • With living by myself, I do have time alone but I am not trusted at times.


Self Advocates In Leadership (SAIL) Of Washington

What kind of messages did you get about sex when you were growing up?

  • I got no information at all. Movies and songs.
  • When I was younger, I received messages from sex education, health education videos, and reading about sex education.
  • High school classes. I graduated in 1999. My parents believed in abstinence until marriage.
  • Learned about sex at Goodwill from a lady (in a class). My Mother didn’t teach me.
  • I learned about sex education from teachers and bad information from friends.

Do you get the support you need to have relationships?

  • I don’t need support. I do it on my own.
  • I am a member of a support circle for someone that helps me plan over several months.
  • No. I don’t get the support or encouragement I need to approach people.
  • Yes, my friends, parents and I support myself.
  • Yes, I get the support of my parents to break up with someone.
  • My family was shocked when I started looking after a long time after a divorce.
  • When I was young, it was never thought that I could be married or own a home or do the normal things.


People First of Washington

What kind of messages did you get about sex when you where growing up?

  • I was told always to wear a condom and sex is not always a bad thing
  • I was taught you shouldn’t have sex until marriage and be screened for HIV and STDs
  • My wife and I had sex and I’m proud that we had a daughter. And  now I’m going to be a grandpa
  • I was told nothing at all.
  • We shouldn’t be scared of sex. If it weren’t for sex, we wouldn’t be here.
  • I got the message about having safe sex
  • I got the message to learn about my body
  • Check your body before having sex
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