What is your disability?
I am Deafblind, with some usable vision and hearing.
My disability is progressive, so I will lose all of my vision and hearing in the coming years.
I also have stage IV kidney disease.
Did you grow up with your disability or was it more recently acquired?
I grew up with vision and hearing loss, although my vision and hearing has changed a lot over the years.
Because of different surgeries and events, I have experienced a wide variety of vision loss.
My hearing has been steadier in progressively worsening.
How do you think growing up with a disability affected your perspective, pride, opinions and culture surrounding disability?
I really did not think of myself as disabled when I grew up.
I would have never said I was blind, because I thought blind people could see nothing. I only ever knew a very few disabled people and was never close to them. I did know that I could not keep up in the sighted world and always felt at a deficit.
I did not know anything about alternative techniques, disability pride, etc. So, it was a pretty confusing and defeating experience.
When I graduated from high school, I went to a blindness immersion training center and was introduced to the National Federation of the Blind and advocacy. Here my life changed dramatically.
Not only did I figure out what skills I would need to do what I wanted, but also was exposed to disability pride and collective action and advocacy.
It was my first taste of disability as identity and the social model of disability. It changed everything.
Did you have disabled role models around you, growing up? If not, how do you think it would have affected you if you had?
I really did not.
There was a blind girl in my school and we shared the teacher for the blind so saw each other every day.
We were friendly but were not friends.
I felt sorry for her because people treated her like a zoo exhibit. I probably distanced myself from her because of that.
I think if I would have had role models, I could have learned more methods to succeed earlier on and my grades would have been better and I would have tried more things. I felt so limited, like constantly being told I couldn’t do STEM careers because I was too blind or too dumb.
I think if I would have known all the other people doing STEM and other careers, I would have had a wider set of choices and expectations for myself.
Did you grow up thinking you would be a mother? Were you scared to become a mom because of your disability?
I always thought I would be a mother because I always took care of kids and I knew I could do it.
But I was scared that I would not be allowed to become a mother or that my kids would be taken away.
My kids are preteen and teens now, so that fear has mostly passed, but it was terrifying in the early years especially.
Does your child have a disability? If so, is it the same as yours?
I have three children.
The youngest does not have a disability.
The two oldest are twins and were born prematurely. One is
Dyslexic, and that has been fairly easy for us to deal with because although he works on reading print, we just showed him how to do everything the blind way as well, with screen readers and things like Learning Ally and VoiceDream Writer.
So he was equipped to adapt right away and except for reading and writing, was able to always keep up in all other classes.
My other son is neurodiverse, he is on the autism spectrum.
It is more challenging for me to know what to do. However, I think being disabled helps us to accept him for who he is as a whole person, see his strengths, and understand the power of the adult autism community to ask for help, mentorship and advice.
I learned from them to not try and fix him, to just work with him where he is at.
Being disabled myself, even though it is a different disability has not only given me the contacts in the autistic community but to understand neurodiversity and to prioritize self determination for him.
How does your child’s lack of disability or difference in disability from your own affect your parenting? Or does it at all?
I try to avoid the mistakes my parents made with me.
I also have more of an appreciation for how hard it must have been for them to know what to do.
There is a balance parents have to find between high expectations and accepting kids for where they are and what they need.
After the basics of feeding and providing for my kids, my main job is to give them unconditional love and a safe place to be.
I always felt like I was a target of ridicule both at school and at home, so there was always this feeling of anxiety and uncomfortableness.
I can’t be everywhere for my kids, but I can make home a safe place to be.
What would you say are the most challenging things about being a mom with a disability?
Being a Deafblind parent is not that hard in and of itself.
Impairment-wise, my kidney disease is a bigger challenge because it affects my energy levels and sometimes I know I just don’t have enough energy to do all the things I would like.
It is constantly managing the spoons.
What has been more challenging is the constant scrutiny
that we get.
My husband, who is blind, was stopped by the cops when he was pulling our son in his stroller.
When I was in the hospital with my twins, they were having trouble eating, which is very common for preemies. One night in the hospital, a CNA who was sort of a friend of a friend came in and woke me up at 4:00am.
She told me that CPS had been called and were coming the next day because some nurses didn’t think I could feed my babies.
It was extremely scary.
I already was recovering from a C-section and I had eye surgery just 2 weeks before.
I was up all night anyway pumping and feeding two babies, and now I had to deal with this. That CNA did me a huge favor.
I was able to rally and get a bunch of people together to come in and advocate on my behalf (which I had planned for ahead of time for just this possibility.) I had a county health nurse, a WIC counselor, a Healthy Start teacher and others whom I had purposely invited into my home beforehand so that I could advocate for myself when I was awake and healthy and not dead tired after giving birth via C-section.
This is what saved me that time.
But especially in the beginning, it was a constant fear.
Everyone is staring at you, and if your kid falls, or gets lost, or gets sick or anything that happens to kids, you fear that someone will call the authorities on you.
Do you think people focus more on you as a mom or you as a woman with a disability?
Probably a woman with a disability.
But kids have been a great social bridge sometimes.
It normalizes you and gives others something about you that you can both identify with.
It’s both good and bad.
Sometimes the connections with other moms and families are made because we both have kids around the same age or the same program. Other times there is really nothing you can do.
My kids take classes in this homeschool coop, and sometimes I would wait in the playroom area with my baby for them to get done with class. More than once, I come in and say “hello!” and I have been aware of people sneaking past me and leaving without acknowledging that I am there or saying hi back.
So, often people tolerate you and are basically friendly but you aren’t really included fully.
And it affects the kids.
People don’t want to set up play dates, etc.
I think we’ve mostly weathered that now and they are old enough to set up their own social lives for the most part, but it is heartbreaking when all the moms are taking their kids to a playplace that you can’t get to because there is no transportation, and you have to tell your kids that you can’t go.
Disability aside, can you access the care, resources and help you need as a mom, or does disability consistently get layered on by the medical profession?
I have the same challenges with health insurance as many families, disability or not.
We are small business owners, so we have to provide our own health insurance, and it has been a mess as everyone who lives in America knows.
What makes it hard is that my kids have gone through about 7-8 pediatricians, all due to changes in health insurance. So, every time you have to start over and establish yourself with a new doctor and get them past the disability.
Logistically, one of my biggest challenges is forms and paperwork.
Most medical practices have made no effort to be digitally accessible for the Blind or Deafblind.
Then they don’t know how to communicate with you and try to just yell at you to get a medical history in the middle of the waiting room, while telling you they can’t send digital forms to you because of HIPAA violations.
Things like MyChart are a huge help, but many offices are not compliant with this and it gets very frustrating. Schools have the same issue.
What would you say your greatest skills as a mom are?
I would say creativity and flexibility, I think?
We are a homeschooling family, which came about a bit by accident but then by necessity.
I took my twins to a homeschool coop preschool and I learned all about homeschooling and decided to try it.
I didn’t have any religious reasons or hatred of public schools, I just thought it was a nice, relaxed flexible lifestyle and since I wasn’t working, it was a special thing I could give to my kids.
Then, when I tried to put them in public school, it just became more work due to their mild disabilities and the school’s huge student:teacher ratio made it impossible for them to meet their needs, so I was afterschooling anyway.
So, then we just started homeschooling again.
It has been a challenge to balance my part-time work, advocacy and projects with homeschooling, but it has been a great way to use all that I have in terms of my education degrees, my resourcefulness and flexibility, and help create something together as a family.
It really is a way of life that just looks at everything as a new learning adventure and the world as your classroom.
What do you think your child(ren) would say your greatest skills are?
I just asked them: “patience, encouragement, tolerance,” says a 14 year old.
“Being nice,” says another 14 year-old
“You are a good girl,” says my 9 year-old
How about weaknesses? What do you think the hardest parts of being a mom are for you?
Managing energy is always a challenge.
So, I know there are times that I could be more available or involved and I can’t keep up with everything they want to do.
Communicating takes a lot of energy, so I have to do it in small doses so I can rest in between.
This is another area where homeschooling and a flexible work schedule is a huge help. I can manage to work and parent around my energy levels. I can’t say that this isn’t a struggle, though.
What do you think your kids would say are your weakest areas?!
Having just asked them:
“You diagnose problems and then come up with a too complicated system to solve,” says the first 14 year-old.
“You bake boring things,” says the second 14 year-old.
“You won’t buy me a tripod,” (for his iPod camera) says the 9 year old.
How do you think the presence of your disability makes it easier or harder to parent?
I mean, there were definitely hard things, like how much I had to move, talk and touch to keep track of twin toddlers at a playground.
But disability is mostly a value added asset in all areas.
It makes you more resourceful, creative and flexible.
It allows you to get to the root of what really is important and needs to be done.
It connects you to a fabulously diverse community and so my little white boys get the benefits of that.
I love that my kids have gotten to meet and get to know so many talented and accomplished disabled people in the community, and also have seen disabled people who are struggling and having to deal with complicated systems to survive.
It hopefully makes them more aware of their privilege.
Deafness makes you a great communicator because you know so many different ways to communicate and can do them all in a pinch in any situation. Blindness gives you a whole sensory world to travel in that others don’t even know exist and so I can share that with my kids.
I’m not saying that being disabled isn’t inconvenient and infuriating at times, especially when dealing with attitudinal barriers and access issues, but mostly being disabled is a fun adventure that offers a unique way to experience the world.
And this is a great thing to share and experience with kids.
What do you wish people would really get about being a mom with a disability?
People get really hung up on the dumbest things.
There are 90 billion ways to do the tasks of parenting and Deafblindness really doesn’t get in the way too much of doing these things. For example, people really got worried about how I would tell if my kids had diaper rash or had clean bottoms after diaper changes.
This was such a non-issue.
You can smell, hear, see and feel diaper rash.
But people think you can only see it.
If your child has diaper rash and you can’t see and hear, you can feel the difference in his skin, you can feel his agitation or crying when you touch his bum, and so you put your diaper balm on it and that’s it.
There are all these things that people are so used to doing visually and can’t think of any other way to do them so assume you can’t do them. But there are lots of ways to do every thing in parenting.
Technology can help a ton, but mostly it is just knowing your kid and being attuned to them.
So, all the logistical stuff is pretty easy to sort out.
What is much harder is getting people past their fears and attitudes about it and that makes it hard for your kids to be included in their school, church and home communities. One of the hardest things for the kids is when other people parentificate them by talking to them instead of us, or saying things like, “you’re such a good boy to take care of your disabled parents.”
This is a concept they just don’t understand.
In general, they are not ever our caregivers, we care for and provide for them, and putting this strange pressure on them is something they just don’t get and have had to learn how to deal with.
So the hardest part is that people aren’t open to just learning about you and your kids, accepting you and working with you to make your family feel a part of things.
Can you tell us a parenting story?! Something funny related to your disability?
Oh, I had my audiologist put a mute program on my hearing aids and I use it all the time! I’m using it now while I write this!
Probably a funny story is how diligent my kids are about walking as pedestrians and riding transit.
They always know to stop at every curb, stop and the upcurb, always wait for a full cycle of traffic before they cross a street, always check-in when getting on and off a bus or train, etc.
So when they go places with other people, they don’t let the other people even move or jaywalk or cross at the tail end of a light or anything even remotely casual about crossing streets. It surprises other people how diligent they are, probably to an annoying level!
They also don’t understand a thing about cars because they never ride them; so on the rare occasion when they do, they have trouble finding seatbelts, door handles, etc, and get carsick.
But they can tell you all the bus schedules, and know their cardinal directions.
They also are astute at dealing with some of the characters you see out in public and have a good sense of how to deal with strangers of all types.
Kids with disabled parents have unique skill sets!
Memoirs and how-to from moms with disabilities:
Podcast and PDF
The podcast episode is below and the downloadable PDF is linked here and in button below (just click it: it will take you to Gumroad, where it will say “name a fair price” or something like that – feel free to put 0 in the box (and you can feel free to pay for it too – really, it’s all good and I won’t be hurt!). After you enter a number, it will take you to the next screen where you enter your email address for the download. I do not store your email address and I won’t bug you after – this is NOT a bait-and-switch thing where I say “free download” just to get your email address then harass you. NOPE! The system will then automatically send you the PDF or MP3 to download via your email).