I have absolutely no idea what I’m doing.

Parenting. I’ve been doing it for 13 years and I still have absolutely no clue if I’m doing it right. My son Carter is officially a teenager today, so I thought it would be fitting to share how I’ve managed as a parent with a disability and the effect its had on my children.

Let’s start at the beginning. October 29, 2008. I had spent the last 10 days in the hospital because my water was leaking and I needed to be monitored. That morning, the doctor checked to see if I was dilated, said we were good to go, and I sent my husband off to work. Less than an hour later, I began feeling really weird. My blood pressure spiked and before I could tell the nurses how bad my head was hurting, I began seizing. Everything after that is a blank for me.

I woke up in a recovery room with a horrific headache, not knowing that I had given birth. My husband and mom had to explain what happened several times before it clicked in my head. My labor had progressed so fast, and because of my paralysis, I couldn’t feel exactly what was wrong. I mean, don’t twist my words, I was in excruciating pain, but I had no idea what was going on. By body experienced Autonomic Dysreflexia (please don’t make me explain what that is. I don’t have that kind of time on my hands. Google it.) which caused my blood pressure to reach what should have a been fatal level; and I had my first and only seizure. Carter John was born 8 weeks, 5 days early. He weighed 3 pounds, 14 ounces. And I’m lucky I lived to meet him.

The weeks ahead were spent traveling to and from the NICU. My body had been through the wringer and I wasn’t really able to slow down. 14 days later, I brought my baby home. That’s where the real challenge began…a challenge that I still accept every day. 

Being a first time parent is hard, but doing it with a disability is an entire dumpster fire. Not only did I have no clue what I was doing, but I knew nobody who had experienced what I was going through. I was literally winging it. Pushing a wheelchair while holding a baby was a skill that took me forever to master. Just going from the living room to the kitchen table to change diapers (yep, I changed my baby on the very table I served dinner to my guests on.) was a literal balancing act. But I did it. Carter and I learned how to navigate life together. That’s a bond we still have today.

Just over a year later, I found out I was pregnant again. I was terrified of having another nightmare delivery. I ended up getting a bad UTI in my 3rd trimester which required a PICC line for antibiotics, but other than that, everything went pretty smoothly. I had Brooklyn Rose at 37 weeks via c-section. She was 5 pounds, 5 ounces…and sassy from the minute she took her first breath.

Why am I telling you this? Because as people with disabilities, life is scary and unpredictable. Things that are a breeze for able-bodied people can cause us so much stress and despair. But we must move forward. We can’t let our circumstances control our dreams. All I ever wanted in life is to be a mom with her hands amazingly full. When I was in my car accident, I promised myself I would not give up on that. And even after a horrific delivery the first time, I trusted my doctors who said they would do everything they could to keep me safe so I could complete my family. 13 years later, I am living the life I always wanted. It may look a little different than I dreamed when I was a little girl playing “mommy” with my dolls, but that’s ok. Everything I’ve been through has made me the parent I am today. And even though I still have no clue what’s going on half the time, my children are kind, accepting, loving little people, so I must be doing something right. I wouldn’t change any of it for the world.


Maybe you’re just a teensy bit ableist.

This is a term that some of you may not have heard before. In case you haven’t, the definition of ableism is “discrimination in favor of able-bodied people.” Even the definition online seems a bit discriminatory. It doesn’t even cover the tip of the iceberg. There are many forms of ableism, but this post is strictly about the kind wheelchair users deal with from day to day. I wanted to do a blog post with some of the things that I have personally heard that have made an impact on me. This isn’t even close to scratching the surface on the kind of ableist language I’ve experienced, but these are probably the most common. I’m not doing this because I want to call people out, because I truly think a lot of the people who say these things just don’t realize the weight of their words. This post is a list of things not to say…and why.

  1. “I don’t see you as disabled.” – This is the exact same thing as saying “I don’t see color.” You may think you’re doing the right thing by overlooking what makes someone different than you, especially a marginalized group, but you are not. You’re basically saying that you don’t see the “unfavorable” thing about someone and you’re willing to ignore it. Please see it. Please recognize it.
  2. “Can I pray for you?” – One time, I was with my three-year-old daughter loading up my car in a Walmart parking lot. We were not in our hometown, so my anxiety was already off the chain worrying about our safety. Out of nowhere, a man walked up to me, and said “can I pray for you?” And I agreed, because I was honestly afraid of the stranger and what he would do to us, so I clutched onto my little girl while he put his hand on my shoulder and prayed for my “healing“. I don’t really need to tell you why this was creepy. But, even in a setting where it is safe, asking a disabled person if you can pray for their healing is very hurtful. We are doing the best we can to live our lives in normalcy. You would not walk up to a random person and ask to pray for them, so you don’t need to do it for us either. If you are someone who prays, and you feel compelled to do so, that is between you and God. I always appreciate prayer in all aspects of my life, but I do not need to know that a stranger felt that my disability made them uncomfortable enough to drop what they’re doing and put their hands on me to pray. I do not think the people who do this mean harm, but just…don’t.
  3. “What’s wrong with you?“ or “What happened to you?” – I always thought that I would much rather have someone ask me about my disability then stare at me and wonder what happened. Then I realized, those shouldn’t be my only two options. Having a physical disability, I understand that I look different than everyone else. That is some thing I wake up with and live with every single day. I do not need complete strangers who have absolutely no ties to my life asking me what happened. Here’s the answer to that one, that took me a very long time to be OK saying. “Mind your own business.“
  4. “You’re too pretty to be in a wheelchair.” – This is another one that I’ve heard several times and I can’t even begin to tell you how ableist this is. Again, you are saying that my disability is something that is so unfavorable that it would diminish my physical beauty. 
  5. “Better slow down or you’ll get a speeding ticket!” – I don’t even really have anything to say about this one. We all just hate it and I’m speaking for every single person that is in a wheelchair. Stop it.
  6. “Have you tried physical therapy so you can walk again?” – This is another one that can be very hurtful. When a person starts out with a disability, or when they are young if they are born with it, they are generally given some type of physical therapy to gauge where their abilities are and if anything further can be done. Unfortunately, physical therapy is not an end all, be all. Eventually, we all get to a point where we have maxed out what we can do. And we work very hard to get there. To ask someone if they can go to physical therapy or telling them that if they try hard enough, they’ll regain movement; is the same as saying you don’t think we have given it our best, otherwise we would not be where we are right now. That is simply not the case.
  7. “I was in a wheelchair once, so I know how you feel.” – Being in a wheelchair for one week because you broke your ankle is not at all the same as having a permanent physical disability. I’m sure it was hard for you not being able to go anywhere for a short period of time, but the discrimination and inaccessibility people with long-term disabilities deal with is something and that should not be downplayed. To me, this is like telling a parent who is dealing with the death of a child that you know how they feel because your kid spent a week with grandma one summer. I’m not saying that these scenarios are the same, but it is equally as crazy to think that either one of these situations would be even close to one another.
  8. Please brace yourselves for this next one. It’s a doozy. Because I know many of you have probably said it before. It’s OK. We’ll get through this together…
    “You’re such an inspiration.” – When you say this to someone, what are they inspirational for? Getting out of bed? Going to the grocery store to buy food for their family? Going to work? Didn’t you do all those things today? It’s not an inspiration to simply have a disability and to move on with life. We are not pitiful creatures that trudge through our days. Most of us just average people doing average things.

This goes far beyond just telling someone that they are inspiring to you for doing absolutely nothing. This is an entire genre of media…and this one has a name, you guys. It’s called “inspiration porn“. No, I’m not kidding. It’s one of those things that is rooted in good intentions, but is so ridiculously ableist and extremely harmful. And I’m going to guess that you have never even noticed it…until now.





These are just some of the hundreds of news stories we see every day where able-bodied people do something kind for someone with a disability and it becomes a “feel good story” that demeans the disabled community and creates very harmful stereotypes. This type of objectification sends the message that society has lowered expectations right from the start. Disabled people are seen as being less or needing someone who is able-bodied to come in and save them or make their life worth living.

That doesn’t mean that you shouldn’t do nice things for people. But it does not need to be exploited. If you want to help a visually impaired person across the street because they have asked you for help, do so. If you want to vote for the girl in your grade who uses a wheelchair as prom queen because she’s super awesome and her hair always looks perfect, you should. If you want to buy me a new Louis Vuitton bag, I would not turn it away. But it doesn’t always need to be a publicized, feel-good story that makes the person with a disability look like they need saving. Because we don’t.

OK. We got through it. That wasn’t so bad, right? Right?? It’s OK if you’ve done some or even all of these things. We are learning together. What is most important is that we move forward with this knowledge and how our words can be harmful to an entire community that is already dealing with discrimination in such big ways. 


The problem with trauma.

May 26th 1999. I was a junior in high school. We had been let out of school early and I decided to take a ride with a classmate. An hour later, I was hanging upside down from my seat belt just trying to stay alive. The months ahead were uncertain, scary, and painful. I had to relearn how to live life sitting down. The things that were once easy for me, like brushing my teeth, were things I had to psych myself up for, just to get the energy to do. My legs no longer worked. My fine motor movement was completely gone. At first, I didn’t even know how I would make it to the next day.

 After awhile, my body healed the best that it could. I gained the stamina to be able to get up in the morning, brush my own teeth and hair, do my own makeup, and go to school. I taught myself how to grab onto things between my palms, in lieu of my non-existent ability to grip. I tried my best to move on with my life in this unwanted and different, but new way. 

 Fast forward 22 years. I have adapted to life in a wheelchair and I do many things independently. I run a household, I raise children, I work, I go to school, and I engage in my community. But one thing will always be staring over my shoulder, reminding me of the fact that I haven’t overcome everything. My trauma.

 Every time I get into my car and pull onto to the road, the intrusive thoughts hit me like a Mack truck. “What if someone doesn’t see me and T-bones me?” “What if my brake lines don’t work when I try to stop?” “What if the hand controls fall off the steering wheel and I can’t control the car?” I am completely aware that these things are extremely unlikely, but they will pop into my head at the most random times. I don’t think I have had a drive without worrying that I could die since my car accident 22 years ago. 

And it doesn’t just end with me. My trauma reminds me often that this could happen to any of the people I love. If I know my mom has to work, I worry that she’ll go off the road into a ditch and nobody will see her. Or that she will get robbed walking to her car in the dark. If my husband is even 5 minutes late from work, I’m calling him to make sure he didn’t get into an accident. If my kids ride the bus to a sporting event, I’m a nervous wreck until they’re back with me. 

For the longest time, I didn’t understand why I did this. It took my therapist explaining everything to me before it all clicked. Trauma is one of the few things the human body doesn’t heal from. So, even though I get in my car every day and get to the places I need to go, my brain will always have that memory of the time I didn’t return home safely. And of the thousands of times the driving was uneventful, that one time will always continue to come back up.

This is so common with people who obtained their disabilities in traumatic ways. We may seem like we have moved forward and gotten on with life, which for the most part we have, but that trauma will always be a part of us. The intrusive thoughts are a normal thing for people with disabilities because we have seen the worst and felt the worst… And every day, we try to get through it without going back there. In my case, exposure therapy has been scary but also helpful. At my last session, I was told to start doing things while driving that I generally attempt to avoid. For example, instead of pulling left on to a busy road, I will turn right and go out of my way until I get to a light where I can safely turn. Sometimes, it makes me late to where I’m going, but I have avoided being uncomfortable, so it’s just something that I do now. As of this week, I have officially started to try doing those things that make me nervous. I assess whether or not doing these things are safe, then I do them, even if I am scared. I had a small victory yesterday when I pulled left out of the Dunkin’ Donuts parking lot instead of going right like I always do. There were no cars in sight, which usually does not deter me from avoiding anyway, but I knew I would be OK, so I went ahead and I made myself a little uncomfortable. I think eventually this will help me to confront my trauma and overcome some of the things that scare me about what has happened to me in the past.

If you are a trauma survivor and you constantly find yourself worrying in otherwise safe situations about all the bad things that can happen, this is completely normal. Our brains and bodies do not forget this type of thing. I urge you to talk to someone about what you’re feeling because there is a light at the end of the tunnel. We live with the disabilities our trauma has left behind, but that does not mean that we need to be subconsciously reminded of it every day. We can take control. 


My anxiety has anxiety.

I was born without a care in the world. I mean, technically, we all were…but I brought that with me throughout my childhood and adolescence. At least until my injury. That’s when anxiety hit me like a Mack truck. I’ll never forget it.

Picture it. (If you don’t get this Golden Girls reference, please stop reading immediately and head to your nearest streaming service.) 12th grade. I was about 4 months post injury. I was still figuring out how to deal with the whispering and staring I got from strangers when they saw me in my wheelchair. I had always been an athlete, so in lieu of soccer in the fall, I decided to join the cheerleading squad. It was our first home game and we were playing our rival. As I was sitting on the sideline, I overheard some of the opposing players talking to the boy who was driving the car in the crash that paralyzed me. “Look at what you did to her.” I don’t know if they meant for me to hear them…and I know they were just trying to get into our teams’ head, but something about being that…noticed…just took all the breath from my body. I began to hyperventilate. I actually thought I was dying. My mom saw all the cheerleaders surrounding me and rushed over to remove me from the situation. I didn’t return for that game. 

Why am I telling you this? Not because I enjoy reliving my first panic attack. But because this is far from where it ended. Anxiety is something that went from a feeling I didn’t recognize enough to be able to decipher it from actual imminent death, to something I prepare for almost every time I leave my house. I’m not alone here. Many people with disabilities are very familiar with the things I feel when I’m getting ready for a concert, or a football game, or even a trip to the grocery store. We have to run down our checklists of what could go wrong and what we can do to try to prevent it. “Will there be parking?” “Does the building have stairs? Uneven doorways? Are entrances wide enough? What happens if someone doesn’t see me and falls on me? Are shelving units too high to reach? What if the handicapped bathroom stalls aren’t big enough?” I could go on forever, but I’ll spare you the hours and hours of yapping I can do about what makes me not want to leave the comfort off my weighted blanket. 

This shouldn’t be a thing. It is 2021. We just sent Jeff Bezos and a bunch of randos into outer effing space. But here I am, peeing in the alleyway outside the bar on a Saturday night because I had 3 beers and just have to break seal; but the bar doesn’t have accessible bathrooms. (I wish I was making that up…that’s a true story.) There are buildings that are exempt from being ADA compliant because they are considered “historical buildings”. Anyone who runs a business out of these buildings is not legally required to be accessible to people with disabilities in any way. I dunno, you guys….seems suspish. And super discriminatory. But it’s completely legal. This is a just another reason people with disabilities are anxious any time they’re planning on going somewhere new. Everything that could go wrong is always at the forefront of our minds.

This may see like something that’s bigger than us. And it kind of is. But there are ways you can help. First off all, write to your local, state and federal officials. We elected these people to make changes in our communities. Hold them to it. Second, if you are in an establishment that isn’t accessible, say something. Eventually, the right people will realize the importance of being available to everyone. And finally, don’t be a dingleberry when you’re out. If you see someone’s struggling, ask if they need help. (If they’re minding their own business and doing fine with their tasks, for the love of Harry Styles please do not bother them.) Watch where you’re going when you’re walking. We’re short, but if you stay at least a teeny bit aware of your surroundings, you won’t walk into our chairs or trip on us. Don’t whisper or point. If you have kids, let them ask us questions. If you’re just a nosey adult, remember that it costs $0 to mind your own business about how total strangers ended up with disabilities. You can be a part of creating a more comfortable world for us to live in so we can be as independent as possible.

If you’re living with anxiety due to your disability, you aren’t alone. Reach out and ask for help. Don’t suffer in silence just because you feel like a burden.  You are worthy and we’ll get through this.