Parenting with a Disability: Amber's Story

The Pregnancy and Parenting Support project exists to assess and raise awareness of the support needs of people with disabilities who are or want to become parents. To further that mission, we are amplifying the voices of parents with disabilities to share their experiences.

Meet Amber Hansen. 

She is a mother of four children, and has been Deaf since childhood. The Sonoran Center’s Content Coordinator, Drew Milne, had the opportunity to meet with Amber and discuss how she navigates accommodations, areas where support is needed, and the joys of parenting that keep her going through it all.

Drew: I would like to thank you for being a part of this, our Pregnancy and Parenting Project. The goal of this project is to share the experiences of parents with disabilities and to discover what resources are helpful and talk about where more support might be needed. We can start by having you briefly introduce yourself and talk about your journey as a parent.

Amber: It's nice to meet you, Drew. I really appreciate you giving me the opportunity to be a part of this panel, because I think it's important for people to learn more about the Deaf community, about Deafness, and the issues that they face. Our issues are unique. It's different compared to other disability communities.

I have four children,  22, 20, 18, and 16. I'm happy to share my experience with getting medical care as a Deaf person, and especially as a Deaf parent. I was able to experience four pregnancies, four births, and also taking my kids to the doctor many different appointments, so I have a lot of experience in that area.  

Drew: So now I would like to ask, what does your disability mean to you?

Amber: So, for me, I was not born deaf. I was born hearing and then I had spinal meningitis when I was 15 months old. Before I became Deaf, I had a lot of one-on-one attention with my parents as their first child, so I was able to speak 50 words before my first birthday. The reason why I'm sharing that is because I had already started acquiring language. So with my parents, because of the first year of my life, I was able to develop a relationship through communication because I had full access to language. They went ahead and started learning sign language right away because they wanted to continue developing a relationship. They knew communication was so important to have that relationship, so I learned sign language right away after I became Deaf. Unfortunately, I'm one of a very rare, few Deaf people that has always had access to language. Many Deaf people do not have access to language. As a result, it leads to something that's called language deprivation. There’s many outcomes in that: negative psychological and social outcomes. I'm one of very few very lucky individuals that has always had access to language. But still, even though I had language, I experience barriers within society, because society still doesn't fully accept sign language as an actual, official language. It's not the “preferred” option, ASL (American Sign Language) is the only fully accessible language for Deaf people, period. But even with ASL, I still have a hard time trying to explain to people why I need a sign language interpreter, why I need full access to communication, why I have the right to be able to have an interpreter so I can get access to the same information as hearing people do. I have to explain that time and time again, but still they often will honor my request. It is a really discouraging and frustrating experience for me. I mean, I cannot imagine what it's like for those who don't have strong language skills to be able to explain why they need to have an interpreter.

"It's not the “preferred” option, ASL (American Sign Language) is the only fully accessible language for Deaf people, period."

Drew: Yes, absolutely. Being able to communicate and have full access to information is a right for everyone. Can you talk a little bit more about communicating with your kids? How do you share that culture? 

Amber: That's one of the things that many people don't realize: that from birth to five is the optimal time to learn language. I'm bilingual with English and ASL, and it has been proven that babies can sign before they can speak. They have the physical ability to sign, to move their hands before they are able to express themselves [verbally]. So all my children, even though they're all hearing, they all signed before they could speak. With my oldest, when she was 5 months old she would respond to the sign for “milk.” So, my children are bilingual and bicultural, and they were exposed to signing at the very beginning. My husband is hearing. He's been an interpreter for 25 years, so he's one who could provide the English as well in the home. I've been able to communicate with my children since they were babies. They were probably some of the happiest babies because I could understand what their needs were, and they could communicate with me.

Drew: It's great that you can have that level of connection with your kids. A lot of people, I think, have the misconception that ASL is a subset or a dialect of English, and that's really not true. It's its own language.

Amber: Definitely.

Drew: Could you talk about some of the other resources that you found helpful in your parenting journey. This could be accommodations, practices, technologies - anything that you've found helpful.

Amber: My go-to has always been interpreters. It's become a common practice for medical offices to provide VRI. VRI is Video Remote Interpreting, meaning that they have a tablet or screen of some kind. They bring that in with an interpreter that would show up on the screen. That's an okay option, but it's not 100% reliable, because technology sometimes does not always work. It sometimes will break down. The internet is very slow. I will share one example where it was not beneficial.

I was in the hospital for about a month. I was having some pain. I was seeing a lot of specialists at that time trying to figure out what was going on. Specialists’ schedules are so unpredictable. So, while I was in the hospital my husband would act as an interpreter. I have that privilege. Not all Deaf people have that privilege, but he doesn't mind interpreting. So, one specialist showed up at 7 o'clock in the morning. My husband wasn't planning to get there until 8:30, so I had no choice but to use VRI. I was laying on the bed, but I wanted to see the interpreter, so I had to sit up, and it was very painful for me to sit up and see the interpreter.

It isn't easy. Sometimes it's really hard to move the screen where you can see the interpreter without having to hurt yourself or feel discomfort. That's one example of why VRI isn't effective. It wasn't the best option at that time.

When the Interpreter comes into the room, they are able to move to where I can see them while lying down.

The medical professions like to use the VRI because it does save money, but the point is it's not the first choice for many Deaf patients. As a parent, when I would go to doctor appointments for my children, I often would have to explain: “I need an interpreter there, please.” They’d say “Well… We can't promise anything. We'll see what we can do.” Maybe my kids had the flu - they would say, “Well, it'll take about 3 days to get an interpreter. Can you come back in three days?” What?! That is not equal access, because hearing people don't have to wait! I mean when it works out in a perfect world, my go-to accommodation is having an interpreter in person. But it is very hard to make that happen. It's very frustrating.

The other thing, too, that is helpful, but also not ideal, is writing back and forth. I have the English skills. I can write back and forth with the doctors. But it consumes so much time. It takes forever. Doctors want to hurry up - they have other patients. They want to stay on schedule. Writing back and forth takes time. To be honest, every time I need to go to the doctor I become very anxious. I don't look forward to it because I have to fight for the things that I need so I can understand the information that is being shared with me. That's my experience.

Drew: That does sound frustrating, where at times it sounds like sometimes they provide just the bare minimum, if anything. But it's not the most ideal or useful thing for the patients or for the doctors.

Amber: Yes, exactly. Exactly. There's a time and a place for VRI. I don't think VRI is appropriate for the ER, or for surgeries. It's not appropriate for many different settings and situations, but that is the number one go-to for a lot of accommodations within the medical profession. For them, the cost is better than having a live interpreter, but it doesn't accommodate Deaf people's needs.

"Every person within the Deaf community is different... Don't assume all Deaf people have the same  preferences when it comes to accommodations."

Drew: So is there anything else that you'd like to mention about your experience, positive or negative, with professionals, including medical professionals? 

Amber: The one thing that I would like to add is: We're all different individuals. Every person within the Deaf community is different. We all have different needs. If one Deaf person requests these accommodations, it doesn't necessarily mean another will request the same accommodation. That's a very common assumption within the medical profession. “Oh well, you have a family member to interpret for you? Have them interpret!” Not all Deaf people have family members that can sign. It's very rare, actually. Again, that's me acknowledging my privilege. My husband is an interpreter, and my sisters are interpreters as well. However, my husband and sisters have to sacrifice their schedule to come with me, so I have to work around multiple schedules. But the point is, don't assume all Deaf people have the same  preferences when it comes to accommodations.

Drew: That's very important to keep in mind. Are there any other difficulties about your parenting journey that you'd like to mention.

Amber:  A few years ago, I took my oldest to the ER. At that time she was 19. She was showing stroke-like symptoms at the time. At that time, with COVID, the hospital was still requiring masks and trying to limit the number of people in the building. The other thing about Deaf parents with hearing children, not all, but many have the philosophy that their children are not their interpreters. My children are not interpreters. It's not their responsibility, nor their job, to interpret for me. So, when I arrived there, I used my notes app on my phone and typed everything. At the front desk I said, “I'm her mom. I am Deaf. I need an interpreter, please. Can you please provide an interpreter?” And they said, “We can't promise anything. Would you mind waiting outside until the interpreter shows up.” I said, “My daughter is showing stroke-like symptoms. I cannot wait outside.” It was August, too, so it was hot outside. That was very frustrating. After going back and forth, back and forth, they finally admitted my daughter and said, “We will find an interpreter for you.” I said, "Fine, I'll be patient and wait for an interpreter. It's not about me. It's about her."

They started treating her, and they kept telling my daughter, “Can you tell your mom? Can you tell your mom?” When you interact with Deaf people, talk directly to them instead of saying, “Well, you tell her, tell him.” Don't do that.  I kept texting them on my notes. “Stop! She has stroke-like symptoms. She's not in the right state of mind to interpret for her mom. That will cause more stress for her.” They tried to force VRI on me. At that point I was fed up. I was ready for anything. I was like, “Fine. We'll use it until the interpreter comes.” So, they brought in the VRI machine and said, “Go ahead and turn it on.” I had not touched a VRI machine before. I didn't want to try to figure that out at all and possibly mess things up with the machine.  It was frustrating that the nurse or other staff didn't know how to work that machine - how to turn it on. It took another 20 minutes for them to figure it all out.

Finally, the interpreter did show up on the screen and one of the specialists came in. He was wearing double masks and he had a really strong, thick accent. The interpreter on the screen was having a hard time understanding the specialist because of his accent. She had to say, “Do you mind repeating that? Do you mind repeating that?” Finally the doctor just yelled at the interpreter and said, “I will talk to you later. I need to explain these things to my patient, and then I'll give you a summary.” First of all, a summary is not the same. Second, that's why I am there - to receptively take in information. My daughter won't remember everything if he's only going to talk to her. The doctor was just going back and forth with the interpreter, and it was unprofessional. I just broke down and started crying, and I said, “Just take care of her. I will deal with you later.” I had mentioned that my sister is an interpreter, and my husband was stuck at work. So my sister called the hospital and said “I will come for free. My sister has been there for 3 hours without an interpreter. Can I come?” And they said, “No, because we have a limited number of people that can be in the hospital.”

The information they were giving me was conflicting. First they said they would get me an interpreter, and now they're saying they're limiting the number of people in the room? And you're telling my sister no, even though she's offering her services for free? Still, they refused to provide the accommodation. That experience was very, very traumatizing for me as well as my daughter. Eventually, the head nurse came up to me and said, “Just FYI, your daughter is 19, which means she's an adult. That means you don't have the right to access her medical information.”

That really broke my heart. I felt like they took my role away as a mother. I was really dehumanized. It was clear a violation of the ADA law. Obviously, this was a traumatizing experience for me. Because of that experience, I have serious anxiety about going to the hospital. I felt like I didn't matter. I also feel like I was an inconvenience, like I was a problem for them that they had to deal with.

Drew: That's shocking. I'm sorry to hear that you had that experience.

Looking back on that, and on other experiences you may have had, what kind of resources do you think would have been helpful? What kind of resources do you think there should be more of?

Amber: After that experience happened, I reached out to the Arizona Commission for the Deaf or Hard of Hearing, ACDHH. It's a state agency that provides resources and information to support Deaf people and their needs. They connected me with ACDL, Arizona Center for Disability Law [note: ACDL is now Disability Rights Arizona].

At that time I barely had started graduate school and advocacy. It was an exhausting experience. But I didn't want to give up. I plan to reach out to NAD, the National Association for the Deaf, and explain to them and share my experience with them. 

I know it requires patience because the legal process tends to take time, but I think it's important to address it. I do acknowledge my privilege. I am educated. I have language. I am knowledgeable about many different things, but I have to fight for it because there's many, many Deaf people that have had similar experiences. It's not right. Something really needs to change, for sure.

Yes, there are resources to help us when we face barriers within society, and yes, we do have the ADA law, but it still feels like it feels like people are finding loopholes so they don't have to meet the law requirements. We're still not getting equal access, even though the ADA has been established.

Drew: Right, and I hope that this project and your story in particular can help to spread that awareness of where the shortcomings are in the implementation of these, these resources.

Amber: Thank you for acknowledging that. Yes. I appreciate your willingness to use this project to spread awareness. It's very important.

Drew: My next question is, what advice would you give to people with disabilities to be self-advocates, and allies to be advocates as well?

Amber: My advice to them: Reach out to agencies and organizations. ACDHH and NAD. Reach out to resources within their community and find people who know and understand the law in the context of their disability, and how it applies to them within their disability community. Sometimes when you're feeling like you aren't getting equal access, that means you are not. Many people may try to convince you that you are being accommodated when, in reality, you are not, so don't believe those who try to tell you otherwise and don't give up.

"Sometimes when you're feeling like you aren't getting equal access, that means you are not... don't believe those who try to tell you otherwise and don't give up."

Drew: Have you dealt with stigma or stereotypes about disability? And if so, how do you deal with that? Have you, in your experience as a parent, been treated differently than parents without disabilities? Or not had access to community or resources that other parents have?

Amber: Sometimes I feel within the medical profession, they think that I am not smart. They feel like they have to dumb down the information they share with me. Sometimes I feel like they're talking down to me, and it's condescending. It feels like the information that they give me is not the same information as if I was a hearing person. I feel like sometimes they choose what kind of information they will share with me. That, again, is not equal access to information. I often feel that they see me as, quote, “less than”. That's very frustrating. The only thing that's different from me and a hearing person is language needs. That's it, that's all. The real issue is, they don't know sign language. So really, the issue is not about me and what I can do. I can do everything a hearing person can do. I just have different language needs, that's all.

Drew: Is there anything else that you would like people to know about your experience as a parent with a disability?

Amber: It's very important to remember that we are the experts of ourselves. We know what we need to receive information and what works for us. When we tell you what we need, please listen and accommodate us, instead of assuming you know what works best for us. You don't. We are the experts.

Drew: I want to thank you once again for being here and sharing your experience and your wisdom. Speaking on a personal level as a person with disabilities, I'm someone on the autism spectrum who's considering becoming a parent. Sharing your experience and your advice has been really really eye opening.

Amber: You know yourself. You know what you're capable of doing. Trust that you will be an amazing parent.

Drew: Thank you. I know that our experiences might not be the same, but I'm glad that we have that common ground.

Amber: Yes, I definitely agree. I really appreciate you taking the time to listen to my story. While my story is not the same as other Deaf people, it is representative of what it's like to be Deaf in the hearing world. So, thank you for taking the time to hear me out and allowing me to participate and share this space and raise awareness about this.. There are many disability agencies and organizations where I feel the Deaf community is underrepresented, to be honest. So, thank you for letting me be a part of this project and providing space to share experiences from a Deaf perspective.