Specialized clinic provides care for pregnant women with disabilities

Article By and originaly published on Global News on May 14, 2017.

Video: A first of its kind clinic in North America is caring for women who have physical disabilities and hope to become mothers. As Allison Vuchnich reports, the Toronto clinic is also breaking down barriers.

Article:

At just one day old, baby Abbas is already a symbol of hope. He’s the first baby born with the help of North America’s first clinic designed to provide specialized pregnancy care to women with a variety of physical disabilities. It opened this week.

With this newest addition to her family, Dalia Abd Almajed is now a proud mother of two — but there was a time she worried if she could have a healthy pregnancy at all.

“I was so afraid when I first knew that I was pregnant with the first baby, because [I use a] wheelchair with all these complications and problems,” Abd Almajed said.

Just four years ago in 2013, Abd Almajed was rushed to hospital after suddenly losing mobility in both legs. She stopped breathing and was unconscious for three days.

When she awoke, doctors diagnosed her with transverse myelitis, a rare disease affecting her spinal cord.

When Abd Almajed learned she was pregnant in 2014, she knew everything — from getting ultrasounds to finding a hospital with accessible beds — would be a challenge. As it happens, she had firsthand insight into the process, as she was trained as a doctor in Iraq, specializing in obstetrics.

Dalia Abd Almajed gets an ultrasound at Sunnybrook’s Accessible Care Pregnancy Clinic in Toronto.

For women with disabilities, pregnancy can be daunting. Many are discouraged from having children. In some cases, doctors have even told women to terminate their pregnancies over concerns it would be too risky or complicated.

Dr. Anne Berndl at Toronto’s Sunnybrook Health Sciences Centre refused to accept these limits.

“To be told that motherhood is not for you, this is not possible for you…this is not an attitude we should have as a society,” Dr. Berndl told Global News.

As a maternal fetal medicine specialist, Berndl cared for women with high-risk pregnancies, including some women with physical disabilities.

The struggles and stigma faced by these women struck a chord with Berndl, and together with the team at Sunnybrook, this week Berndl launched the Accessible Care Pregnancy Clinic for women with a variety of both invisible and visible physical disabilities. It’s the first of its kind in North America.

Berndl wants all women to feel well cared for, and is in the process of developing a new standard of care for women with disabilities.

“We’re trying to provide education so that we can provide a shift in attitude to create a positive environment for women with disabilities,” she said.

Dalia Abd Almajed  is one of many mothers benefiting from the Accessible Care Pregnancy Clinic at Sunnybrook.

According to Sunnybrook, women seeking care at the clinic may have a variety of disabilities, including spinal cord injuries, severe arthritis, spina bifida, cerebral palsy, multiple sclerosis, chronic pain, muscular dystrophy, scoliosis or have a history of trauma such as a car accident.

Examination rooms and birthing units are wheelchair-accessible with special scales and chairs designed for patients with limited mobility.

Women with disabilities often require more complicated care because of underlying medical conditions, but Dr. Berndl said the majority can still have a healthy pregnancy.

By coordinating with all specialists involved, from the obstetrician to the dietitian, the clinic streamlines checkups and makes appointments much easier for women with limited mobility.

For Abd Almajed, Dr. Berndl helped her through her first pregnancy, and now the newly launched Accessible Care Pregnancy Clinic made all the difference in the healthy delivery of her new baby boy.

“Before, I didn’t think that I can do it — but I did, so I hope everyone will have [a] baby like me,” she said.

The Last Taboo

STORYLINE

These persons share their outlooks on affection, connection, friendships, relationships and, according to their experiences, they share what they’ve learned about themselves. Basically, the overall idea of the film is that… “In bed, everyone’s able.”

The maker of this film, Alexander Freeman, had never felt comfortable with his own sexuality. It was always that strange thing that he wanted so badly to explore, because in order for you to really understand yourself you have to be able to experience the touch of another person. One time a girl who was a friend of his gave him an experience that changed how he saw his own sexuality. It was the first time that he felt attractive. But he still had questions. He decided to find out why it is perceived to be the last taboo. He has cerebral palsy, which basically means that he doesn’t have total control over his muscles. But, everything still works down there.

The problem with the word “disability” is that it has a negative connotation from the get-go. It automatically implies that there’s something that somebody “can’t”, or something that somebody “isn’t”, and that becomes defining, foundational definition of the way somebody thinks of somebody and then it spills over everything including sexuality.

People will look at something and they’ll think it’s beautiful if it falls under certain guidelines and that is what puts so much stigma on the idea of someone with a disability being a sexual person, because people can’t quite connect the dots between the idea that someone has a non-normative body or presentation and the fact that they might be sexual.

The Last Taboo conveys a captivating and comforting story of six people with different physical disabilities and a fit partner who was in a relationship with one of them.

Gaelynn Lea talks about sexuality and love as a disabled woman in a TED talk

Sexuality and Disability: Forging Identity in a World that Leaves You Out 

In this TED Talk video, Gaelynn Lea talks about how she felt left out of mainstream dating and beauty culture due to her physical disability. She recounts the epiphany that empowered her to pursue life, love, and a musical career on her own terms.

 

///ACSEXE+///Hodan///

TEXT OF THE VIDEO

(Music)

(Chalk noises+music)

Deaf Identity

 

During my childhood I identified like a normal person, which is to say that with my parents,with my brothers and sisters I found thatwe were all equal, all the same.My parents didn’t give me any specific education about this subject.Then I went to secondary school, got my diploma, and it’s at this time that I really did a lot of personal learning independently,it wasn’t my parents that gave me a particular education, so when I got my diploma I moved to Montreal, and that’s where I saw that really there was a particular culture and identity for Deaf people,

Really we had experimented the same frustrations,it was a big relief to meet other Deaf people, and to feel the same as them.But I’ll tell you, that came a little late, I must have been 25 or 26 when I really discovered that there could be a Deaf identity. So, because we had effectively the same identity:  we were all Deaf we had had the same problems, the same obstacles, and that’s where I identified myself as a Deaf woman, but not just Deaf, a Deaf woman, feminist but not disabled. It’s really society who gives us the label of being a disabled person. I think that with time we have to make people aware, to really inform them, that in the end to be a Deaf person it’s absolutely not a disability and that we have to be considered on the same level as hearing people.

In my daily life, like I said, with my friends I feel like I’m on the same level as them, I find that’s great. It’s more on the level of hearing society, at the level of accessibility of government services, such as the Ministry of Health or Education, really that there are obstacles and we have to continue our struggles and battles, and I know that it’s long but I think it’s in the same way that other disabilities have their struggles and battles, it takes time.

There are very few adaptations that have been made, there aren’t always interpretation services available or accessible, so in Canada there’s a huge delay. And what’s more, it’s 2015! And we don’t yet have access to the services that we would have a right to . Whereas in the US they’re very very advanced in this area, and similarly, in terms of communications technology they’re a lot more advanced than Canada.

 

(music)

Deafness and sexuality

When I was young, I never had a boyfriend, so I met my first boyfriend, would was hearing, I must have been 23 years old I think. when I was young I’ve never had a boyfriend before I think that I was a little hesitant, I was on the defensive, I felt physical unready, I had friends who had already had sexual experiences, Deaf boyfriends, who had gotten into couples, I asked them questions and we discussed, they told me a little bit of what happened and shared their experiences, and their, you know one day I met my boyfriend who was hearing, so I remember everything that my friends had told me of their experiences of being in a couple, and I asked myself if that would be any different because I was with a hearing person.

So I asked myself if sexually there would be a difference or not. It’s funny, really, my body, I felt it, hesitancies like I was on the defensive, I didn’t know too much how to do it, on a sexual level, but my boyfriend was really patient, for a whole year he was very patient with me. So one day he asked the question “but Hodan how can we make love?” “How can we have sex?” – and it’s funny but that made me like, a feeling of a loss of self-confidence but it’s true he said “we can’t talk, you can’t hear my voice” And I’d say that that developed even more hesitance and defensiveness on my side, so I finally decided to abandon all of that.

It took a certain amount of time, but finally, three years later, ya it took three years, that we didn’t see each other, and I returned to the same guy and we started dating again, and we went, I would say 6 months, he was very respectful. Myself, I understood more about sexuality as a Deaf person, I understood that everything had to go through looks, through our eyes, through the visual, that it wasn’t a question that we would make love with the lights off. I hadn’t mentioned it before because I didn’t understand what it was, but with all the experience, the understanding, and to finally tryt it, I saw a big difference. But emotionally, I had no more feelings with him, so we decided to end that relationship.

With time I realized, also, that I had much more self-confidence as a woman, with my sexuality, with my body. And my current partner, we’ve been together for 5 years, we have a little girl, and really, we are very happy. We have a normal relationship, just like hearing people, except that the only difference is that we’re Deaf.

My daughter is a CODA (Child of as Deaf Adult), that means that her two parents use sign language with her, because her parents are Deaf, but you see everything is going very well at the level of communication. I’m really happy in my relationship, I’m very happy with my daughter.

 

Between Deaf people

(music)

So, for real, I will tell you that I prefer to be in a relationship with a Deaf man, because, at the level of understanding, and identity, we’re the same, fundamentally we’re the same. If I was with a hearing person, for sure he could probably understand some things about Deafness, but not from A to Z, probably just some of it, and he would always miss some things about Deafness that he couldn’t understand.

But , with a Deaf person, it flows, our communication is fluid. Sexually, it goes really well as well. So, I don’t want to generalize, it’s not the same for everybody, but I would say that me and my partner, on a fundamental level are the same, we’ve had similar experiences, it goes well, whereas  a hearing person would have difficulty understanding the frustrations that we’ve lived in regards to lack of accessibility and all that.

All that means that, for me, as a Deaf woman, I prefer to be with a Deaf man.

(music)

 

These video have been produced by FQPN and realised by Rozen Potin. Responsible for the project: Charli Lessard and Aimee Louw. With the participation of Isabelle, Caroline and Hodan. Translation: Aimee Louw

***See all the ACSEXE+ video***

///ACSEXE+///Caroline///

(Instrumental music with talks in English)
(Music and chalk noises)

I’m a trans woman. I’m… I  identify as asexual, but, not like aromantic. Because I like… I like to have special relationships. And umm, I’m on the autism spectrum, lots of weird anxiety things, I have experienced lots of things, relationships… maybe also sexuality, all these things, which is… particular and I think there are lots of things that combine as part of my experience that are unique and that I’d like to share.

I know that often, when I see other people’s experiences it’s rare that there’s something that I find represents me well. And I think that we need more special cases of weird people.

(Instrumental music)

Internalized Ableism

One barrier is that, in general, we have expectations about how people behave and how they use… move, interact, we have expectations about these and these expectations aren’t necessary… it’s not everybody who can… fulfill respond to these expectations. And so just living, in general, in the world, with these people, and trying to do in that world, it’s something that burns up my energy, because I always have to conform to these behavioral standards.

For a long part of my life I tried just to… not exist and to take up as little space as possible, and to make as few movements as possible because, it was safer. Now, I try to take up more space and to take that space in my own way. There’s a bit of… when I try to state my needs, especially when it’s something really specific in a particular moment, often it’s difficult for me because I find my needs illegitimate, and that it’s just too complicated. So there’s lots of internalized ableism.

When I try to explain to my girlfriend, certain of these needs that I could have, it can relate a lot to internalized ableism, so that could be hard. Difficult for me, but also difficult in terms of education because when I’m becoming really anxious because I find that I’m asking for illegitimate things that are just complicated and that I try to ——, that doesn’t put me in a good position to education people because I have the impression that I’m bad. So…

Generally, in my experience, the moments that autism or anxiety become visible are when I’m really not doing well. So, stating my needs in advance, that could be really positive. It’s also really important in terms of consent. But when that comes up in the moment, when I feel bad I can’t give advice to someone on how to interact with me. I have to say: “Ok, that, that works generally, but if I do this, ‘stop’.”

(Instrumental music)

(a)sexuality and disability

 For me, what’s important is relationships. And everything that can be more sexual, related to sex, bodies generally, in my experience that’s more linked to the fact that I’m trans and everything related to my body follows from that. I think that my sexuality and my asexuality could be understood in relation to my trans experience. But again, I don’t that think that we can just link it to my disability, and I don’t think that we can just link it to… to my trans experience. What I’d like people to understand about asexuality, like umm… is that… okay, I’ll say three things.

One: It’s an experience that it’s completely as legitimate as all the other forms of sexuality or other forms of relationships, also, or desire of relationship. Because, me, I want to be in relationships. There are people who don’t want that, and that’s super legitimate too. So that, that would be the first thing.

The second thing is that… to be in a couple and make love, that doesn’t necessarily have to go together. I think one thing that we try to valorize in sex-positive discourses is that we can move beyond. Marriage is not necessarily exclusive, like it was the 1960’s. We can have something more diversified, but we can also not have the need for that in a couple.

And I think that the third thing I would say is to not forget that… even if there isn’t… you know… to my knowledge, there isn’t systemic violence against asexual people, that doesn’t mean that the group doesn’t live forms of “oppression”, or experience marginalization in certain communities, and are easily forgotten. And that we have our place in, you know the long acronym of LGBTQIA, and that the A is not for allies. That asexual people have their place in communities and movements around sexual diversity, and diversity in general. Because it’s not true that we’re that well integrated in many spaces. For example, we’re poorly integrated in lots of spaces that call themselves queer.

Often, the things we say against asexual people to de-legitimize their experiences, are the same things that people used to say against homosexual or bisexual people, against trans people, against intersex people, so it’s not necessarily the same thing, but the same type of attitude and discourse and the same schema.

I think that we have to understand sex-positivity as not necessarily more sex, but like, more diversity and more openness to different experiences. That could be more openness like less traditional ways to approach that, to not want to make love because it’s not something that I understand and it’s not something that I find important.

(Music )

These video have been produced by FQPN and realised by Rozen Potin. Responsible for the project: Charli Lessard and Aimee Louw. With the participation of Isabelle, Caroline and Hodan. Translation: Aimee Louw

***See all the ACSEXE+ video***

///ACSEXE+///Isabelle///

(Musique)
(Musique + chalk noises)

Me, Isabelle, who am I? That’s a big question! Primarily I am a PhD student in community psychology, and a huge feminist for 6 years now. I’m really involved in the cause for women who experience disability. Aside from that, I am a lover of adventure, travel, I’ve always loved to go beyond my personal limits. As a woman with a disability sexuality and meeting other people has not always been simple for me. People consider us as disabled people and not as disabled women, as though we were asexual. In fact, the fact that we have a sexuality as a woman who experiences a disability is very, very taboo. At the level of society, people hardly talk about that, it’s not recognized, it’s even unpleasant for people, it shocks people. It’s really a shock for people to understand that, yes, we really can have a very blossoming sexuality.

(Musique)

I had my first sexual relationships very late. My first love and my first kiss, were… my first kiss was at 24 years old, whereas the majority of women have their first kiss at 12, 13, 14 years old… so that means that we arrive at an adult with less experience, less knowledge, and unfortunately it’s easier to live with different situations of abuse because we know sexuality less and we know our bodies less. We’re also, unfortunately… we have less self-esteem, so it’s more difficult to say what we like and what we don’t like. So, I find that it’s really difficult, the fact that we have less sexual experience, that they arrive later, that could bring abuse, unfortunately.

Often, when a person has a disability, people pass over the subject of female sexuality really fast. It’s placed to the side and definitely all aspects of enthusiastic consent, which is a pretty complex aspect, more complex than we think. Consent doesn’t just mean “yes” or “no”, it also means to be good with yourself, to be at ease with yourself and with another, to blossom, it’s not just to say “yes I want that.” At a given moment in a sexual act, it could be going too fast or too far and we can’t stop it in it’s tracks. But we can, at every stage and at any time of a sexual act we can really stop it in it’s tracks and say “That’s enough for me”.

(Musique)

Self-Confidence

When you have a physical disability like mine, your body is different and could have… in any case… for me what I have, I learned fast in my entrance into adult life, and in my life as a woman, that in knowing my body and its reactions that are unique to it, and that are its own, that I could have a real sexuality. In the knowledge of and in respecting my own body, that’s where I could have a sexuality. It’s by knowing myself, respecting myself and respecting my own body  that I can live a sexuality. And I even think that it’s important to, in the first place, have a sexuality, with oneself before a sexuality with a partner. And so, that’s what I would like to say to all the women that have different types of disabilities, “have confidence in yourselves.” You have to have a strong enough self-esteem and find yourself beautiful enough to put your foot down and advocate for a beautiful sexuality. Because it’s not enough to have a sexuality, it has to be a beautiful, blossoming sexuality! And that’s what I want to say the most “Find yourselves magnificent!”, we’re all magnificent! We all have an incommensurable value, and we all have a body that is worth the trip. So carry your body with you, it’s beautiful, it’s pleasant, it’s different, and it’s in that difference that it’s magnificent, we’re all different and it’s because of that that people will love you.

These video have been produced by FQPN and realised by Rozen Potin. Responsible for the project: Charli Lessard and Aimee Louw. With the participation of Isabelle, Caroline and Hodan. Translation: Aimee Louw

***See all the ACSEXE+ video***

What is ACSEXE+?

(Musique)

Caroline: “For me ACSEXE+ represents… recognizing diversity and difference in relationships and needs, and in the desire for relationships, and to take that diversity of different people who have a lot of different backgrounds and to accept and integrate them with love… and strawberries!”

Hodan: “When I look at myself in the mirror as a woman, I’m happy with the image that I see. It’s really really positive. I have confidence in myself, I feel good, I feel beautiful. And my partner accepts me as I am. That, that influences me, the image that he has of me, I find that that gives me a certain sense of power also. And like I said before, I have a lot of self-confidence. So really (our sexuality) is good.”

Isabelle: “For me sexuality is a fundamental right! Our bodies have demands, our bodies have needs. Sexuality is part of everybody’s lives, and too often, the rights to sexuality of women who experience disability are violated. So for me, I’m part of this project, to advocate for my right to sex!”

These video have been produced by FQPN and realised by Rozen Potin. Responsible for the project: Charli Lessard and Aimee Louw. With the participation of Isabelle, Caroline and Hodan. Traduction: Aimee Louw

***See all the ACSEXE+ video***

Talking about sexuality during the WWM 2015

”I want to talk about sexuality during the Women’s World March #WWM2015 because, as women with disabilities, we are diverse. Therefore, we are heterosexual, bisexual, homosexual, and anything you can think of. Voilà!”
Isabelle Boisvert, women’s rights activist and co-organizer of the #WWM2015.

During the Women’s World March 2015, Action des femmes handicapées (Montréal) and Fédération du Québec pour le planning des naissances are offering a space to talk about sexual and reproductive health and rights. Because our bodies and sexualities are spaces of resistance, emancipation and liberation!

On october 17th, with thousands of others, we will be in Trois-Rivières to reclaim the liberation of our bodies, our Earth and our territories!

***Consult all the videos***

Sex positions for those with disabilities

Ok, let’s face it: it can be awkward communicating about sex.

Sometimes we’re in the heat of the moment and we want to say something, and the words don’t come. Or we’re not in the mood and don’t or can’t explain why. It could be said that sex is a topic to be discussed in the bedroom. However, that’s not the whole picture. Sex is all around us: on TV, in magazines, in music, in porn and other media. But we’re not the ones defining the terms.

With representations of sex all around us, where are the real people in all of this?

Representations of sexualities and bodies are everywhere but there are so many taboos around our real, messy sexual experiences. Not everyone fits those representations, in fact, hardly anyone does.

Talking about sex helps us define what we want, what we don’t want and what we’re not sure about, instead of relying on pre-existing ideas that are prevalent in our society. For example, that sex is between a man and woman, there’s no build-up, there’s penetration, everyone knows what to do, and there’s a mutual orgasm and then its over.  What about oral, the use of toys, giving pleasure with our hands, pleasurable sensations on other parts of our bodies?

We believe sex should be discussed everywhere!

Given the ac-sex-ability considerations that some of us might have such as assistive gear, varying levels of privacy depending on our living situations, communication tools, catheters, fluctuating pain levels, side-effects from medication, mood swings, and many others, it makes sense to discuss our desires and needs before we hit the bedroom. We can be leaders in pre-sex communication! It can take some of the pressure off and sensitize both or all people involved to the needs each person has. A little ‘heads-up after sex I don’t talk because I’m overwhelmed and that’s ok’ goes a long way to mutual understanding. Likewise, a discussion of sexual positions that are comfortable and pleasurable prior to simply trying them bedtime rolls around can do a lot for our sex lives.

Try communicating about sex, safer sex methods, bowel and bladder routines, desires, fantasies, fears outside of the naked bed sexy time! (P142, Ultimate guide to sex and disability)

To be clear, when we refer to communication, we mean in anyway that you communicate, in all it’s diverse forms: written, drawn, verbally, through body language, with assistive technologies, through symbols, in whatever ways work for you.

It may not cross your mind to share your desires or ask what your partner(s) likes before you hit the bedroom, but it may not be the most calm, fruitful discussion as you’re undressing either. By then your hormones are already racing and you’re not as patient and levelheaded as you might be at a less charged moment.

Has anyone ever told you not to go grocery shopping when you’re hungry?

You end up buying things you don’t want, things that are way over your budget, or instantly gratifying snacks that end up making you feel bad. (No junk food judgement intended. We love chips;) The same goes for sex: if we save communicating about it until we’re really hungry for it, we might not respect all our boundaries, or do things we otherwise not want to do.

What if you were to discuss sexual positions, over coffee for example, or talk about some of your fantasies while snuggling on the couch? Anyone for a discussion of condoms and diaphragms over trail mix on the couch on a Sunday afternoon?

Whatever it is you need to talk about such as protection methods, your personal desires and needs in the bedroom, or navigating personal care schedules, discuss it when you’re feeling calm and comfortable; in those intimate but not overly vulnerable moments. So that you can be close with your partner or crush but not feel completely exposed.

Think of it this way: Ice cream.

Say you really wanted it double chocolate chunky flavoured. Your friend offers to treat you to a cup but you’re too shy to tell them exactly what kind you want. They bring back vanilla. Vanilla tastes good anyway, and sure, you’ll eat it, but… you didn’t get exactly what you wanted.

If the person you’re going to get down with knows how to make you feel good (aka knows your fave ice cream flaver) and enters the bedroom with that knowledge, things will only be that much better!

If looking for a few tips to starting that sex-talk, here are a few suggestions:

1. Beforehand, think of some of the main points you would like to share and imagine yourself expressing them in the way that you communicate. You could jot down a few notes for yourself or practice what you’d like to say in private. Whatever you do to organize your thoughts. Imagine the conversation going well!

2. If you’re wondering how to start the conversation, you could mention you read a blog post on ACSEXE+ blog about sex-talks, and go from there…

3. During the conversation(s) you could mention how you feel about it as it’s happening. It’s cute and endearing to let the other person/s know if you’re ‘feeling awkward’ or ‘have never talked about this stuff outside of friend circles’ or are ‘nervous because I really like you’. Personally, those kinds of statements puts us at the ACSEXE+ headquarters at ease when someone says them because chances are I’m feeling nervous and awkward too! Saying how you feel allows for a few chuckles and lifts some of the pressure. Don’t worry, you’re cute!

No pressure:)

These are examples of how things could go, its not a recipe that works for everyone. Ask yourself what are the ways you’d like to talk about sex, what are the most comfortable places? Try it out, don’t expect things to be perfect. Practice with your friends or cat – the more experience you have talking about sex the easier it’ll go.

Take this couple for example:

One of them has paralysis in his legs. They are a heterosexual couple, and these positions could also be used with a strap-on dildo. They try sexual positions together in their clothes to find out what will work for them, and what will be fun, before the naked fun begins! This too, can be more fun than you think, and can bring you closer together as you work toward the same objective. Yay teamwork <3

The video is in English but for those of you who don’t understand English, the images are useful on their own. Sorry there are no sub titles or closed captioning. It would be great to access videos like this in French. If you know of any, please post below!

This video is an example of two people who are committed to finding ways to pleasure each other comfortably. I love that they experiment together with their clothes on in a low pressure environment, to get an idea what will work before they’re in the heat of the moment. That way if it’s awkward or someone falls or it takes multiple attempts to get to a good spot they can laugh about it and be prepared when the hot, naked version rolls around.

Remember lovers, if things don’t go well its ok! It takes practice to communicate about sex and we learn as we go. Let us know how things go!

<3<3

Post written by  Aimee Louw and inspired by « The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness» (2007) by Miriam Kaufman , Cory Silverberg , Fran Odette