Life and Hacks Living with SMA Type 2

Tell us a little about yourself.

My name is Louise and I’m a 38-year-old woman with SMA 2 living in Denmark. At the age of 2, I got my first electric wheelchair. Because I was so young I don’t remember a time where my disability hasn’t been a big part of my everyday life. I got a degree in social work from university and I worked as a freelance social worker for a while. The last couple of years I’ve been focusing on advocating for disability rights and raising more awareness to what life can be like with a disability.

What made you start your Instagram to become more than a personal page, and really become the influencer and educator you are today?

Growing up I didn’t really know anyone with a disability like me that I could talk to on a daily basis. I didn’t see anyone with SMA (or just in an electric wheelchair for that matter) in the media so I didn’t have anyone who I could look up to and who I felt represented me.

That’s why I started my Instagram profile @justawheelchairgirl. I wanted to be the one I needed when I was growing up. I want to share my story and let young people with disabilities, and their families, know that having a disability doesn’t have to stand in the way of a great life. Yes, there are several things I can’t do but there are so much more that I can do. I’m proud of the online community I’m part of where disabled people can help and inspire each other and make friends with people from all around the world.

Tell us a little more about what life is like with SMA 2.

When I was growing up there was no treatment for SMA. That was just how it was and something we had to accept. As time goes by I’m getting weaker which is a pretty scary feeling. In recent years a few different treatments for SMA have been developed, but unlike most other countries Denmark doesn’t offer this to other than a limited number of children. It’s so incredibly frustrating knowing that there’s a treatment available, but I can’t have it because I’m a Danish citizen. I (and others) are advocating for getting access to the treatment in Denmark no matter your age.

 

 

What does your day-to-day look like?

Due to my disability, I have assistants 24/7. I’m the employer so I always have to be on top of things and plan everything which can be somewhat stressful from time to time. That being said it’s also pretty nice to be surrounded by good people all the time. I have a very close relationship with my assistants and we often become great friends.

I spend a lot of time creating content for my Instagram profile and engaging with my followers. I mainly use my phone for this as my limited movement makes it easier for me to navigate a phone than a computer. Smartphones have really been a game changer for me as they have provided me with much more independence than I had before.

I try to get out every day but to be honest it doesn’t happen every day. I’ve learned that my health is the most important thing so if I’m feeling fatigued or under the weather I allow myself to stay in bed without beating myself up for it. Accepting things as they are and making the best of my situation is key to me and something I focus on. On the days where I leave my house, I like to go to beautiful destinations. It doesn’t have to be far away, it can be a park nearby or the waterfront.

And I have to admit that I like to shop and I guess I spend quite a lot of time doing so. The last couple of years it has mainly been online but I also enjoy a trip to the mall or city center whenever it’s possible.

Besides from living my life like everyone else with friends, family, and social activities I also have to manage the SMA part of my life. Taking care of my health, going to physiotherapy, and making sure that I have all the disability aids I need is a big part of my daily life.

You have started a fantastic theme of disability hacks on your Instagram, What made you want to start this?

It was never my plan that my profile should be all about me. I’d like to make it a community where we can share experiences and encourage each other. Throughout the years I’ve learned that I can do most things - I just have to do them a little different sometimes. Many of my disability hacks started because I found myself in the same situation several times where I wished for a good solution - and then my family or I came up with the solution I needed. I get so happy when people write me that they’ve been using my hacks and found them helpful. Hopefully, we can make this a bigger thing where people submit their disability hacks to me so I can share them with my followers. That way we can all help each other.

If you could tell your younger self anything, what would you say?

It’ll be alright, no need to worry. You can do anything you want - you just have to work for it differently than your friends. Great things that you can’t even imagine right now will happen to you.

What’s something you want others to know about your disability?

Because of my disability, I can’t “just do” a number of different things that many people take for granted. For instance, taking a quick shower or a quick trip to the local grocery store takes quite a lot of time for me. Having a disability like mine can be very time-consuming and I sometimes wish that more people understood that. I spend a lot of time taking care of my health with things that are related to my SMA 2: Doctors’ appointments, nurses’ appointments, different check-ups and physiotherapy. Then there’s all the time I spend on applying for and maintaining different disability aids. You don’t just get handed a wheelchair or a wheelchair-accessible van - it takes a lot of time (and often causes a lot of frustration) to get these things, which I need to live my daily life and get out and about.

Advocating for your own health and rights is also both time and energy-consuming. Even though it shouldn’t be necessary it’s often a big part of life with a disability. On top of all the things related to my disability I also have a standard life like everyone else that I want to live.

What’s one piece of advice you’d give to someone who’s disabled?

Don’t assume that everyone else has it easier than you. We all struggle with something - in our case a disability. This is not to say that the struggle isn’t real, because it is. To be honest, I don’t think the struggle that comes with having a disability ever stops but it becomes easier as you become older and learn how to work the system. When you have a physical disability it’s fairly easy for other people to get that you sometimes struggle, although they may not understand the extent of it. But nondisabled people struggle as well. Different people have different circumstances and I find it helpful to remember that a life without a disability doesn’t equal a life without struggle.

What’s your go-to outfit to feel confident?

Wearing something that I feel flatters my body makes me more confident. I like asymmetrical or waterfall dresses and blouses because I’ve found out that asymmetrical outfits often flatter my asymmetrical body. I know a lot of people stare at me whenever I leave my house because of my disability so I like to wear an outfit that might take some of the attention away from my wheelchair and help people focus on me as a person instead. Something colorful or sparkly is often helpful in that situation.