At Home with MS

MS often brings the prospect of major lifestyle changes. It’s important to ensure that the home environment for those of us with disabilities provides the support we need to lead safe and happy lives. Typically, doing so involves making some type of home modification. When modifying your home, the goal is to achieve independence and safety.

When we bought our condo, the first thing we did was have grab bars installed in our bathrooms. We also bought a riser recliner to help me get up out of the chair. As I mentioned in my last post, we’ve made even more changes as my disability progresses. Making changes to your home is part of the game of adapting. Improving access and making modifications not only conserves energy and helps fight fatigue, it provides you with more independence.

Lighting is an important safety consideration. Hallways and stairwells often lack any windows allowing for natural light, so take special care to light them properly. 

The bathroom can be a dangerous place for anyone. Grab bars should be placed throughout the bathroom to provide you extra support. Getting up from the toilet and maintaining your balance in the tub or shower is easier when grab bars are present. This is smart even if your MS isn't severe because balance problems and weakness can unexpectedly occur. The toilet is another area that will require a personal assessment to determine your personal needs. If it’s too low for you to easily transfer to and from, an elevated seat is an easy fix. Some come with arms or guard rails for additional support. Your bathing area is especially important to get right since water will add extra risk. Shower stalls with curtains, roll-in accessibility, and a seat are the safest options even if you don’t use a wheelchair. Eliminating the need to step over a ledge or tub wall also greatly reduces your risk of falling. A roll-in shower is optimal but a shower bench is also a big help.

Many of these home adjustments can be done yourself, but always be sure to consult a professional when it comes to mounting grab bars and other furniture to the wall. Have a two-way dialogue when determining what modifications to make and exactly how they’re made; never get talked into anything you’re not comfortable with. When in doubt, get a second opinion and consult an occupational therapist on your best options. Professionals can be your guide to safety, but it’s important for you to have input on what will make your living arrangements comfortable and accessible.

The ability to live our lives safely, especially in our homes, is very important. Accommodations serve the invaluable purpose of ensuring the human dignity of people with disabilities.

If you rent, you should know your rights.

NMSS Brochure: At Home with MS

Inspiration Porn

You may or may not have heard the term “Inspiration Porn.” It is defined as any meme, video or feel-good article that sensationalizes people with disabilities. It was coined by the late social justice activist Stella Young in 2012, when she wrote an article titled “We’re Not Here for Your Inspiration.”  She writes: “Let me be clear about the intent of this inspiration porn; It’s there so that non-disabled people can put their worries into perspective…It’s there so that non-disabled people can look at us and think ‘well, it could be worse… I could be that person.’” It objectifies disabled people for the sake of non-disabled people.

A common caption to these images is a Scott Hamilton quote, “The only disability in life is a bad attitude.” The images are meant to motivate; If these people can live with just one leg,” for example, “I can do so much more without a disability.” It comforts us. But it also incorrectly assumes that disability can actually be overcome with a smile and a little bit of determination.

Once, when I was still on forearm crutches, I visited a friend that lived in an apartment situated at the top of a steep flight of stairs. As we were leaving, my husband helped me down the stairs and went to get the car. I waited on the sidewalk and saw a woman rushing down her own set of stairs. She seemed to be coming straight at me. And she was. She said something along the lines of, “I just watched you climb down those stairs and I think I have seen you here before.’ I’m thinking, okay Adam hurry up. Then she said, “I think it’s great that you get out. I just wanted to tell you that.” I thanked her and Adam pulled up and that was the end of it. But that experience stuck with me. I know she had good intentions but I wonder if she knew she actually made me feel a little small. I impressed her because I lived life with a disability. I visited a friend. If you took my crutches out of the situation, would she have approached me? No.

The reality is that disability is a social experience. The disabled population is not just here to inspire you. We aren’t people doing extraordinary things. We are living life.

Watch Stella Young’s Ted Talk here.