The Ultimate Guide to Sex and Disability

the guideThis book by Miriam Kaufman, Cory Silverberg, and Fran Odette is eye opening.  It’s written by people with disabilities for people with disabilities and focuses on the joys of sexual intimacy.  As a typically developing person, it challenged a lot of my assumptions about sex and made me think about new things.  Chapters include: Myths About Disability and Sex; Desire and Self-Esteem; Sexual Anatomy and Sexual Response; Communication; Sex with Ourselves; Sex with Others; Oral Sex, Penetration and Positioning; Sex Toys, Books, and Videos; Yoga and Tantric Sex; S/M; Sexual Health; Sexual Violence and Sexuality; Resources; and Glossary of Gender and Sex Terms.   I want to share two passages with you.

Sex and Spontaneity

“We’re taught that sex is suppose to be spontaneous, something that just comes naturally (like ‘true love’).  This belief is damaging to everyone, but is a real problem for people living with disabilities, because any amount of planning makes sex not spontaneous.  Believing in this myth pretty much ensures a lously sex life.
While sex has many meanings, at its heart sex is a process of communication.  Whether we are flirting from across a crowded room, giving someone head for the first time, or making love while listening to a piece of music that totally turns us on, being sexual is being in contact with ourselves and our surroundings.  The idea that this process can happen without thinking, talking, or planning is ridiculous.
Maybe we are willing to buy into the myth of sexual spontaneity because talking about our desires is difficult.  It’s risky, and makes us feel exposed and vulnerable, and often vulnerability is equated with weakness.”

This made me think a lot about the way I teach reproduction and sexual intimacy.  I tend to focus a lot sexual behavior, but not as much on the planning and communication that comprises that behavior.  Also, I do a lot of role playing, planning out what you’re going to say in advance, and scripting.  I’ve never really done that around negotiating intimacy.

Privacy

“If we were taught anything about sex at all when we were younger, many of us learned that sex was something private, inappropriate to talk about or do in front of others.  Privacy becomes a requirement for sexuality.
From someone living in an institution, or using attendant services, or needing the assistance of someone else to facilitate communication, privacy is a completely different reality.  The definition of privacy changes when you have no lock on your door, or when you request private time at a specific hours knowing that it will probably be written down in a log-book.  This myth is one of those ‘no-win situations,’ because we’re told that real sex is a private matter and, guess what, you can’t have that kind of privacy.”

This passage really challenged me to think about how I teach privacy and how I teach about relationship types.  I think sometimes I might ignore that what a lot of people think of as privacy and the individual I am working with reality of privacy are two disparate things.

I do wish this book focused a little more on people with intellectual disability and was written at lower reading level.  I do think people with ID/DD could read it with support, especially sections.  Much of the book is testimonies by people with disabilities and I think these passages could be great teaching tools.  There are also suggested exercises- one of the exercises was about looking at your body.  I teach antimony all the time, but I don’t think I’ve ever said, “when you’re at home, alone in your bedroom, look at and feel your body and check out the parts we’ve been talking about, you can even use a mirror.”

Dave Hingsburger- Blogger, Advocate, Educator

For those you how enjoy following blogs, and especially for those of you who enjoy blogs that feature individuals with disabilities, and particularly if you would like to read more about disability and sexuality- this blog is for you.

Dave Hingsburger is behind many of the resources from Diverse City Press such as Handmade Love/Finger Tips (masturbation education), No How (abuse prevention), and Undercover Dick (condom use).  He also has written several books such as The Key (supporting individuals with disabilities who are also sexual offenders), R: The R Word (bullying self-advocacy), and Just Say Know (victimization).  This is not an exhaustive list, but it gives you an idea.

Enjoy!

Making Visuals

There are many different ways to make visuals: cut and paste from magazines, jot down words and images, use Boardmaker, use power point…

For each method there are different pros and cons and a lot can be said for something that’s just plain easy to use.  I also don’t think there’s anything wrong with a visual that has been made quickly- if it gets the message across, it doesn’t have to look nice.

But sometimes it is important for for a visual to be ascetically pleasing- and I wanted to share a free tool that’s available for making infographics (what marketers and advertisers call visual supports).  It’s not particularly easy to use and it takes more time, but in the end you have a nice looking product.  I would use this I wanted to make something I could use over and over (it’s worth the time) or if I was working with someone who thinks my regular visuals are “babyish”.  You have to be careful about resisting the temptation to over clutter.  There are several different generators, but for no cost, this one has the most flexibility and is relatively easy to use.  http://www.easel.ly/

This visual goes along with the “What Should I do?” exercise we did during the workshop.  You can download this visual as a PDF.

Planning and Structuring a Presentation/Class/Activity/Lesson

I know a lot of you already do a lot of lesson planning, but when you’re new, it can be a little difficult figuring out where to start.  Here are step by step instructions for lesson planning as well as a lesson plan template.  To see examples of some of my lesson plans click here, here, or here.  You may not need to be so structured every time, but it helps in the beginning.  It also good to have a series of documents that you revise so you’re not re-inventing the wheel every time.

Step1: Topic

What do I want to make sure that I have time to talk about?  What are the most important issues for me to cover?

Step 2: Audience

Who is my audience?  What adaptations will they need?  How long is their attention span per activity?  Will I need to adjust the room?

Step 3: Goals & Objectives

What are my objectives?  What do I hope participants will learn?  (More than two or three goals and objectives may be unreasonable)

Step 4:  Lesson Plan

Write the outline for your presentation and allot estimated time to each segment.  Consider potential activates: focus writing, videos, lectures, questionnaires, stem sentences, drawing/art, responding to pictures, matching, sequencing, pro/con lists, continuums, attitude assessments, ice breakers, guided imagery, journals, role plays, case studies, stories/media, brainstorming, creating teaching materials, building models, myth/fact sheets, self assessments, thought bubbles and small groups (this is not an exhaustive list). Whatever you choose (1) make sure there is some variation (2) build your activities from more structured to less structured, (3) warm up your participants for sensitive topics, (4) and allow for participation through multiple modalities.  You will probably run out of time so schedule the least important things last or know exactly what time you have to cut earlier activities off. It’s good to either over plan or have a few tricks up your sleeve in case one of your activities bomb or you run out of time.

Step 5: Practice and Coordinate

Practice and, if working with a partner, delegate facilitation responsibilities.  Is the time frame realistic?  Do I understand each activity?  What can I cut if necessary?

Step 6:  Materials

Gather any materials you will need.  This list would include handouts, visual aids, flip chart, materials you’ve developed, ect.

Step 7: Arrive Early  

Developmental Messages for 0-5 Year Olds

In The Birds and the Bees workshop we talk a little bit about how we start teaching folks about sexuality from birth. We mostly teach sexuality through how we socialize and interact with infants.  SEICUS has a set of guidelines for being more intentional about promoting healthy sexual development in 0-5 year olds.  For me, some of the developmental messages and core concepts where exactly where some of the guys I’ve worked with were at, even if they were much older.  I especially like the discussions about sexual abuse prevention (pages 56-57), masturbation (45-46), and sexual curiosity (47-49).  I also think you could get some great ideas for teaching about gender roles (59-61) that you could do outside of what may be considered a sex ed class.  For each of the 19 topics they discuss they include a discussion section, key messages, additional messages for older preschool children, and how adults can help.

You can download the guidelines for free… RightFromTheStart

New Laws Regarding Guardianship and Access Sexual Violence Services

Thank you to Kelli at the Developmental Services Center for sending out this information!  Over the past three years, three laws have been passed that improve public policy with the goal of increasing access to services for women with disabilities who experience sexual violence:

P.A. 96-318, eff. Jan. 1, 2010-  Consent of a guardian, health care surrogate or health care power of attorney is not required in order for a victim with a disability to receive health care or release forensic evidence following a sexual assault.

If a victim with a disability is unable to consent to the release of evidence, and the victim’s guardian, health care surrogate or health care power of attorney is unavailable or unwilling to release the information, an investigating law enforcement officer may release the evidence.

P.A. 96-1010, eff. Jan 1, 2011- An adult with a guardian can:

  •  decide whether his or her guardian can look at her/his rape crisis center records; and
  •  decide whether or not to waive the rape crisis center privilege.

P.A. 97-165, eff. Jan. 1, 2012-   An adult with a guardian can attend up to five, forty-five minute counseling sessions without the consent of, or notice to, the guardian unless the counselor or therapist believes such disclosure is necessary.

Click the link below to download fact sheets created for advocates and self-advocates

Public Policy Committee Fact Sheets 6.12.12

These fact sheets are a product of the Illinois Imagines Project, a collaborative among the Illinois Department of Human Services, the Illinois Coalition Against Sexual Assault, and self-advocates for people with disabilities.

Thank you to these groups who not only created these facts sheets but also advocated for these protections!

Explaining Anatomy

I had a blast in Carbondale (thank you all)!  People really responded to the time we spent thinking about how to explain concepts like arousal and orgasm.  In the anatomy lesson of the curriculum we’ve been did this summer, I have similar explanations for explaining the reproductive parts of the body.  I’m going to include the entire list here, but if the entire list is too overwhelming for your students choose 3-5 physiological parts to focus on per gender.  I would recommend reading over the full WEB MD definitions of these terms (click here for the worksheet Body Part Functions)- you may come up with better explanations!

Some general ideas I try to convey…

  • Some people’s reproductive organs are mostly inside the body and some people’s are mostly outside the body.
  • Reproductive organs are a system of tubes, canals, and storage centers that connect to one another.
  • Reproductive organs produce genetic information and try to bring it together. 

Vulva: A part of a person’s body that is used for reproduction, urination, and pleasure. The vulva is outside the body. Every vulva looks a little bit different, but they all have folds of skin, openings into the body, and a clitoris. During puberty, the folds of skin become covered in hair.

Labia majora: Skin that protects the vulva

Labia minora: Skin that protects the opening to the vagina

Clitoris:  Skin and nerves that cause pleasure

Vagina (birth canal): The vagina is used for reproduction and pleasure. During reproduction, the job of the vagina is to connect the uterus to the outside world. When a baby is born, the vagina squeezes in a special way to help the baby out of the uterus. When being used for pleasure, the vagina can be touched to make the body feel good.

Uterus:  Where a baby grows

Ovaries: Holds the eggs (which hold genetic information)

Fallopian Tubes:  Connects the ovaries and the uterus


Penis
: A part of a person’s body that is used for reproduction, urination, and pleasure. The penis is outside the body. Every penis is a little bit different but they all are shaped like tubes with a small hole at the end.

Scrotum: A tissue sack that holds the testes. During puberty it gets covered with hair.

Testicles (testes): Produces sperm (genetic information)

Epidermis: Where sperm mature

Vas deferens: Brings sperm to the urethra

Ejaculatory ducts: a connector.

Urethra: carries urine and semen out of the body

Seminal Vesicles & Prostate Gland: Produce sperm energy

Bulbourethral gland (Cowper’s glands): Produces lubricant (makes things slippery)

Impact: A Newsletter

A workshop participant put me in touch with this awesome resource (thanks Cate!).  Impact is a newsletter from the University of Minnesota’s Institute on Community Integration which is part of their Center for Excellence in Developmental Disabilities.  They have many products and services that you may find useful (many of which are available online or at little cost).  Their newsletters contain ” strategies, research, and success stories in specific focus areas related to persons with intellectual, developmental, and other disabilities. ”

The sexuality issue has several interesting articles written by individuals with disabilities, service providers, family, and community members.  In addition to the articles, the newsletter provides information about additional resources in several areas: education, parent support, advocacy, sexual health, and sexual safety.

The story in Impact that touched me the most was one about two men who were harshly punished for their love for one another while institutionalized but were finally able to be married.  Once they were both living in group homes and reunited…”they decided they would not live together, they would not have sex, until they were married.  They had been punished so often, told continuously that they were dirty, sinful, hateful creatures, that they needed to get married ‘liked other people.'”  Dave Hingsburger* commented “How we hate the hearts of people with disabilities!  We have caged their bodies, disfigured their genitals, drugged their thoughts.  But we have never, ever captured their hearts or controlled their spirits.”

*The link in the text is to Dave Hingsburger’s blog.  He is the author of several resources for teaching human sexuality and abuse prevention to individuals with intellectual and developmental disabilities.  The resources can be found at Diverse City Press.

How to Explain Sex to Someone with an Intellectual Disability

This may be more difficult than it appears at first.  I like to communicate and teach broad and complex ideas about what sex is, but this can be really difficult for folks to grasp at first.  I usually start out talking about reproduction because it’s a little more concrete and then move into sex more generally once reproductive intercourse, erection, ejaculation, and arousal have been covered.  So lets start with those (and I’ll toss in a couple other concepts that may be difficult to explain).  These are how I explain these concepts, but a curriculum you use may have other suggestions you find helpful.  I used board maker pictures here, but real pictures would also be appropriate in many cases.

Arousal: “When you have sexy feelings and you feel tingly or excited all over your body especially in your private area*.”

*You could substitute genitals, vulva, or penis for private area to be more concrete.  Sometimes with middle school students I say “you know where” to be intentionally more vague- but only if I’m confident they do know where.

Erection: “When blood fills the penis making it harder and bigger”.  I follow this up with the why it happens, “because you have sexy feelings.  You feel aroused.”

Sometimes I add, the blood fills up the spongy tissue of the penis, but other times I omit the blood part and just say the penis gets harder and bigger.  This would depend on the level of complexity the individual can handle.

Ejaculation/Orgasm: “You have sexy feelings, your body feels really good, and you get so excited that you have an orgasm- a big burst of sensation*.” If they have a penis, I add “then fluid comes out of the penis.”  If they have a vulva, I add “then some fluid may come out of the vagina”.  If they ask what kind of fluid you could add, “a sticky milky fluid” and then if they have a penis, “with sperm in it.”

*If sensation is an inappropriate word you could replace it with feelings.

Reproductive Intercourse: “When a person put their penis in another person’s vagina and releases sperm, ejaculates.  If the sperm meets with an egg then the person might get pregnant.  A baby might grow inside the uterus.”

As students are first learning I do call this sex but once they have this I build that sex is bigger than just one act.  It is heteronormative* to present reproductive intercourse as if it was sex.  It could make students who are not interested in vaginal intercourse feel as if their form of sexual expression is less valid.  At the same time, the students that I work with are often overwhelmed by all the new information and have difficulty navigating all the nuances.  When I call this form of sex, “sex”, I do match it with vaginal sex, reproductive intercourse, or intercourse to allude to the idea that there are other forms of sex.

*If you’re not familiar with the term heteronormative, it refers to when heterosexuality is used as the default.  It also refers to other lifestyles that are considered the default.  For example, a heteronormative definition of family would be if you used, implicitly or explicitly, a husband, a wife, and children as the definition of family.

Wet Dream: “Sometimes when you’re sleeping you have have sexy feelings.  These feelings can be so good that you may get really excited in your sleep.  You may feel so good that fluid comes out of your body.”

If they know erection and ejaculation, you can use those words too but I try to limit my use of those words if I’m not confident they have a full conception of the terms.

People with vulvas can have wet dreams too! Regardless of whether there is ejaculation, having organisms and arousal during sleep can be scary. It is an important thing to prepare children for as their bodies change with puberty.

Sex: “Sex is when two people have sexy feelings they want to share with each other so they touch each other’s private parts to make each other feel good.”  You can expand it further, “A person might put their penis inside a person’s vagina.  Sometimes people kiss and lick each other’s vulva or penis.  A person might put their penis inside a person’s anus*.”  If they ask why someone has sex, I would answer “Either because they want to have a baby, because they love each other and they want to share those feelings, or because they want to have fun.”

*I would use butthole if I thought that was a word the person understood better.  In this definition, I’ve defined sex as anal, vaginal, or oral intercourse.

Sperm/Egg: The cells inside a persons body that have genetic information.

Not all folks will grasp the concept of genetic information but they will probably know that it means scientific or medical information.

Next week, well be covering reproduction in Human Sexuality 101 so look check out the curriculum for that section for more information.

Menstruation Plan

In preparing for the puberty section of Human Sexuality 101 I was looking at research on methods for teaching young girls with ASD about menstruation and came across an article using Social Stories (only a preview of the article is available for free).

In short, here’s the Four P Plan for Period Support

1.  Prepare a period kit

2.  Preinstruct (perhaps using social stories)

3.  Practice

4.  Plan for pain relief

Klett & Turan used a combination of three Social Stories adapted from Mary Warbol’s “Taking Care of Myself: A Hygiene, Puberty, and Personal Curriculum for Young People with Autism” (this book is not just for girls).  They implemented the social stories before menarche (first period) and then planed to revisit them after menses began. These stories focused on growing upwhat a period is, and how to take care of a period (I would reprint them but you have to be careful about Social Stories and their copy rights). They also used simulations with the girls using red syrup so they could practice changing a “used” menstrual pad.  They reviewed the social stories over several days and completed simulations over several days.  They also used different types of menstrual pads in case the girls did not always have access to the same type.  They also asked the children questions about menstruation to check for comprehension (such as “What is the blood from your vagina called?” and “Do you need to wear a pad when you don’t have your period?”).  This method proved effective in these case studies and the parents who implemented the plans where happy with it.

ImageI have a good friend who made a menstrual kit for his daughter to start keeping in her book bag around age 11.  In a zip lock bag he placed a change of underwear, menstrual pads, Tylenol, a change of shorts, and bathroom wipes. That way, if her first period was at school, she had everything she needed and wouldn’t need to ask for support unless she wanted to. I personally think this is a wonderful idea and wish my mom had thought of it when I was middle school!  This idea has caught on because you can buy premade kits. Also, they make underwear that help keep menstrual pads in place.

I have heard that some families also preemptively use pain relief to support with discomfort and PMS.  Not all girls associate the physical discomfort with their period or are able to communicate “I feel bloated” or “I have cramps.” Although these are phrases that you can teach and prompt, some families just start using an over the counter painkiller two or three days before they anticipate the start of the period.  This isn’t foolproof because, especially when girls first start getting their period, they may have irregular cycles.

Autism Now- A Resource

Autism Now isn’t specifically focused on topics related to sexuality but they do have some great resources I thought I could highlight.

They have a series of webinars related to sexuality topics. If you click on the link you’ll be taken to a registration box that you have to fill out to view the material.  I’ve also included links to the slides- this is a direct link, you don’t need to register.

Slides:  “Sex is when people use their bodies together to share love and pleasure.”

Slides: “Research says that the IQ has to be below 50 before you can say IQ and parenting skill are connected (Feldman& Tymchuk, 2002).”

And they just had one on May 15th, but you’ll have to keep an eye on the archive list because it’s not up yet-  “Let’s Talk About Sex: Discussing the Topics of Sex, Protection, and/or Sexuality from Three Unique Viewpoints”

In addition to the webinars they have some general “fact sheet” style info that might be helpful on topics such as dating, marriage, divorce, relationships, sexuality, parenting, and friendships.  These include general information as well as parent tips.

I was really impressed by the quality and quantity of ASD related resources on a variety of topics so it’s a good one to have in your tool belt.

I just wanted to link to one other power point presentation that I thought had a lot of good information.  “Sexuality & Sexuality Instruction with Learners with Autism Spectrum Disorders and Other Developmental Disabilities” by Peter F. Gerhardt, Ed.D., Director The McCarton Upper School

Gender Identity and Disability

During the workshop we talk a little bit about gender identity and gender fluidity but I thought it might make sense to talk about this topic more in depth.  Parks, Hall, and Taylor* looked at gender dysphoria (discontent with with biological sex) with individuals with cognitive disabilities and suggest “Developing a gender dysphoria or wanting to cross-dress usually has ramifications for the person’s family and social network, perhaps more so with people with intellectual disability, who may be more dependent on family and paid caregivers and have less choice about who is in their network. They may experience more hostility and gain less appropriate support from their network.”  But there is still very little information about how common it is, why for some individuals gender is more fluid (have a wide flexible range of gender expression), and how best to support individuals with disabilities with issues related to gender.   This topic also raises issues related to guardianship and self determination.  Some individuals start going on puberty suppressants and hormone replacement starting in adolescence so their bodies can match the gender they express and the gender they identify with.  For people with disabilities, who gets to make that choice?

Could having a developmental disability lead to difficulties with gender identity?

This is a little difficult to answer.  There are very few studies ask this question.  In Holland they looked at co-morbidity of ASD and gender disorders * and did find more individuals with ASD coming to their clinic then you would expect.  However individuals with ASD may be tapped into to services which might account for this difference.  When individuals with disabilities seek support they may be unable to give an accurate history and professionals in this area may be unfamiliar with working with people with disabilities which could lead to false impressions.

Given how little is known, where can I go for more information?

There are new clinical guidelines that address how clinicians should assess and support individuals with autism and persistent gender dysphoria. The new clinical guidelines (there haven’t been any in the past) affirm the right of individuals with autism to obtain gender realignment. It also affirms that many individuals with autism experience gender outside the male-female binary. Check out a reader friendly overview of the guidelines on Spectrum News.

Gender Spectrum is a great place to start looking for more information.  This is a website that can link families with medical, mental health, social, and legal services.  The have great definitions of all the different terminology and a great overview of gender development.

Here is also a This American Life podcast that features interviews with two little girls who were born as biological males and their families.  For me, it was really eye opening and helped me connect this topic to real people.

On May 19th the Washington Post published an article on this topic (which I thought was really well done) featuring a little boy named Tyler.  The story had almost 2,500 comments 5 days later.  They published a follow up article about the response on May 21st, “I heard from transgendered senior citizens who lamented their decades living a lie.  I got e-mails from confused parents who had their aha moment when they read Tyler’s story.  And sure, I heard from the haters”.  This article not only has nice information but also speaks to the relevance and controversy surrounding this topic.

*This links to the abstract of the article.  Unfortunately, the full text of the article is not available for free online.

Implementing Sexuality Education

When you think about implementing sexuality education, it is important to think of what your agency is already doing because it is often easier to build on something than to start from scratch.

I’m going to present a model for one approach for implementing sexuality education at the agency level.  This isn’t the only way to do this, but rather a suggestion of one path that I have found to be successful. Your agency may already have completed some phases or find some phases to be unnecessary.

Phase I: Start a committee- bring together a few people who are interested in topics of human sexuality and willing to do some of this work.

Phase II: Draft a sexuality policy- this will serve as a foundation the committee’s path.

Phase III: Invest in curriculum and teaching materials-  you don’t need much to start out with, but I think it’s helpful to have something and you can always add later.  Having said that, I’ve never come across anything that didn’t need some adaptation.

Phase IV: Start thinking about who you want to target and how- do you want to do small groups or individual education?  Who is going actually implement the education and what support do they need (training, regular meetings to process how it’s going)?  What will your process be for getting individuals receiving services involved?  (I’ve attached a sample Referral Form).

Phase V: Start Implementing!

Phase VI: Expand and Revise- self advocates, expanding curriculum, increasing training for all employees…there’s so many interesting and fun places you can go.

You may be saying to yourself, “this is great, but I’m not really in a position to implement agency wide change where I work”.  Here are some questions to ask yourself in regards to what you can do at a personal level.

  • Where could I fit in with what my agency is already doing?
  • How can I reinforce and incorporate human sexuality concepts into my everyday interactions?
  • How can I incorporate human sexuality concepts into programing?
  • What can I do to advocate for human sexuality education?

Supporting People with Disabilities with BEING Sexuality Educators

What does supporting people with disabilities with BEING sexuality educators?

It’s all about self-advocacy!

According to SDC (UIC’s Institute on Disability and Human Development and their Sexuality and Disability Consortium (SDC), “Sexual Self-Advocacy means: People with disabilities taking control of their own sexuality by making their own decisions and speaking up for themselves and others about sexuality.”

As sexuality educators, individuals with disabilities can be…

  • Safe people for their friends to talk to
  • Knowledgeable sources of information
  • Leaders and co-leaders in educational sessions
  • Models of healthy sexual relationships
  • Advocates for raising awareness about sexuality topics
  • Fill in the blank ____________

This is a great webinar to learn more about how to advance sexual self-advocacy for people with disabilities.

Another great resource for learning more about sexual self-advocacy is  The Green Mountain Self-Advocates.  They have developed materials for self-advocates interested in teach human sexuality (as well as many other topics).

SDC recommends the Developmental Disabilities and Sexuality Curriculum which has a self-advocacy component built in.

Let’s Talk About Ability and Sexuality

http://vimeo.com/17317232

This video was filmed at the Healthy Relationships and Sexuality Conference in California 2010. What’s special about this conference is that it was organized by people with disabilities (and their allies) for people with disabilities.

I’ve highlighted some of my favorite quotes from the video. My main point in posting it, is not so much that you watch it and learn a bunch of facts, but rather use as an example of a teaching tool. Creating a video like this is a wonderful learning experience and helps give purpose and permanence to the expression of ideas.

“Sexuality needs to be part of the service planning process” – “It’s not the people with disabilities who are uncomfortable but the staff who are helping support them” – ” “The definition of support needs to change as the person changes” – “A person with a disability can always find love” – “Disability does not define me. The way I think about other people and the way I treat other people: that’s what defines me” – “Maybe people will eventually become more open to us” – “If you get asked a frank question, give a frank answer”