On Touching Me Without Permission...

I was going through my Twitter feed this morning and came across this really interesting article on Vox.com titled "Are you a jerk to people with disabilities without even knowing it?" The story is basically about Scope, "a British group which advocates for people with disabilities, [that] has partnered with the advertising firm Grey London and TV presenter Alex Brooker to make a clever series of ads meant to help non-disabled people avoid being awkward (and, you know, actively offensive) when interacting with people with disabilities." The ads are pretty clever, and I have to admit, it'd be pretty cool if those aired here in the US, where we think we're oh-so-PC about these sorts of things. So I thought I'd offer my own perspective on people who think they're trying to help and, in reality, really aren't.

I'd like to preface these experiences by saying that in my professional travels and encounters with strangers, people have been nothing but extraordinarily kind and generous to me. Much of this awkwardness and insensitivity is borne out of benevolent ignorance and inexperience being around people with a disability. I'm just hoping maybe it will help you understand how to perhaps approach someone the right way when that instinct to assist hits you.

The day before yesterday, I was in San Diego to give a presentation to a civic group about my new book, Border Insecurity. It was at a lovely Italian restaurant, and the presentation itself went great! I met a lot of awesome people, and as you can see in the picture of me sitting next to my trusty walker with a glass of wine in my hand, it was a relaxing and enjoyable experience. It was a tight space in the room, and people had no problem getting up and sliding chairs or tables to the side so I could squeeze through with my walker to my designated spot.

After everything was done, I walked out with the event's organizer to get to the car taking me back to my hotel. The valet guy saw us and immediately said he wanted to help me however he could. I said very casually that I was fine, I do this all the time. He insisted. I got to the small curb and did what I usually do--just turned around, stepped off the curb backwards, then pulled the walker down in front of me. However, without asking permission, the valet grabbed my arm in an attempt to support me and help.

This exact scenario happens to me frequently, where people automatically try to hold me up or touch me in some way that they feel is helpful. It is ALWAYS without asking or me granting permission, and it's pretty infuriating. How many of you reading this like having complete strangers touching you without permission? Exactly. It's also often most unhelpful because it throws my already precarious balance completely off. And just as another reminder, I do this every single day. I limp around the side of my car when I get out and pull my walker or scooter out of the trunk all by myself, then put it back in when I'm done. I get into stores or offices or restaurants--many times with a curb that needs to be negotiated--by myself. This isn't a defiant statement like my almost-4 year-old makes when he says "I can do it by myself!!" It's just that I, and other people like me, have learned through experience how to do these things for ourselves out of necessity.

This isn't to say I have a problem asking for help. Trust me, I don't! Prime example: Thursday evening getting into the car taking me TO the restaurant. My right leg has a tendency to stiffen up when I'm getting into a car, and the more I stress about hurrying up, the stiffer and straighter it gets. That night I was in a tight dress and trying to get into the rather small back seat of a Prius. I made it most of the way in, and my foot/shoe got stuck in the corner where the door hinges on to the car. I awkwardly asked the driver if he would mind helping me. I told him exactly what to do with my foot and what I would do with my leg to help it bend and get into the car. It worked out just fine. A few minutes later, I joked that traveling with MS was always an adventure, and he told me a good friend and former bandmate of his has had MS for many years, so he was familiar with the trials and tribulations of the disease. We ended up having a really great conversation for the duration of the 30-minute drive.

So the lesson I hope to impart on all you kind and generous folk who want nothing more than to genuinely help a person in need? Just ask first. Don't make any assumptions about what a disabled person can or can't do on his/her own. They managed to get around before you came upon them, and will continue to do so after you walk away. If they need something, they'll ask. And maybe sometimes they won't because they don't want to bother anyone, but they'll LOVE the fact that you asked first, especially if it involves bodily contact. In the meantime, keep opening doors, picking up things that have been dropped, or grabbing an item that is just out of reach, because these are all things we should strive to do regardless of another person's abilities :).

My Response to a Question about "That Sh*t on Your Leg"

I have to apologize first and foremost about the crude blog post title. Rest assured this isn't my usual language, but quoted from someone else. One of the hazards of writing for a large media outlet like Breitbart Texas is that you open yourself up for the general public to criticize or question. Trust me when I tell you the public does NOT hold anything back in the anonymous space known as the comments section of a story.

Several days ago, my managing director at Breitbart agreed to post the video of my interview on The Tavis Smiley Show from this past week, despite the fact he knew the mostly hard-core conservative readership might not agree with my more moderate opinions about how to tackle the illegal immigration problem. We talked about other border security-related stuff in my book, but that's what people would likely zero in on. However, he felt it was important to offer different voices and points of view, so they posted and we braced for some serious heat...that didn't come. Honestly, I was surprised, although I could chalk it up to maybe no one wanted to sit through the roughly 13-minute video. The initial comments criticized the show's host (who is a known liberal), but nothing about my views that was negative.

So imagine my surprise when I saw this comment from "1bimbo":


what the f*ck is that sh*t on her leg, take a day off and heal up for crisake

Again, my apologies for the foul language, but it's not mine :). To give you some context, here's a screen still from my interview that Breitbart Texas used for the story:

If you take a look at my right leg, there's certainly an odd contraption attached to it. While most of my interview was conducted showing me from the chest up, there were some shots of my entire body where this device was clearly shown. It must certainly have seemed strange to "1bimbo," who apparently thought I had it on as a result of some injury I could stay home and heal from before appearing on national television.

So in response to "1bimbo" and anyone else who might be curious about "that sh*t on [my] leg," it is called a WalkAide, and it's an electronic stimulation device that essentially keeps me from falling flat on my face. If you're reading this blog for the first time, I'll tell you that I've had multiple sclerosis for over nine years, and one of my symptoms is something called drop foot. Basically, when I take a step, my brain is unable to make my right foot pivot up to clear the ground when my right leg swings forward. As a result, my foot just flops down, and since I can't lift my right leg up at the knee either, I have to swing my right leg around in a wide arc just to walk. Amusing, I assure you. You can actually see this pretty cool video of the difference a WalkAide can make in a person with MS-induced drop foot.

Enter the WalkAide (or the competing device, called the Bioness L300):

Inside the cuff are two electrodes that are placed in the exact spot where a small electric jolt can stimulate my peroneal nerve. When I get that jolt with every step, through a reflex action my foot is forced to flex at the ankle, which allows it to clear the ground when I take a relatively normal step. Do you see that little box with the blue knob? Inside that box is a tilt sensor exactly like the one that's in your smart phone and makes your screen rotate when you change the position of your phone. The specialists calibrate the timing between that sensor and the electrodes to make sure it's perfect every time I take a step.

Does the WalkAide stick out? Sometimes. I can wear it under my boot-cut jeans, capris, and work slacks with no trouble. I'm still trying to figure out whether to cut holes for the electrodes in my (rather expensive) skinny jeans or just convert them into cutoffs. The device is obvious when I wear a dress, of course, and I get asked a lot about it. 99 times out of 100, people think I have some sort of injury or am recovering from surgery when they see it. I mean, how common is it for a young and (I'm told) relatively attractive professional woman to be using a walker or electric scooter? The producers of the show asked me if I'd be comfortable talking about my MS if Tavis wanted to address the device or just chat about my background, and I said I'd be more than happy to; they even had a printout of this blog! But in the 13 minutes we had to talk, we (and happily so) had more than enough ground to cover with just the book.

When people do ask, I tell them I have MS and the cuff is a device that helps me walk better. Usually after I give them a demonstration (there's a little test button on the control box), they're fascinated and so excited that I can take advantage of medical technology. I also tell them their tax dollars paid for it and thank them profusely, since I got it through the Veterans Administration. The reaction is ALWAYS, "I'm so happy my tax dollars are finally going towards something useful!" That usually makes an interaction that started out awkwardly (what do you say when someone tells you they have a lifelong chronic disease with no cure?) much more comfortable by the end. 

So, Mr. or Ms. "1bimbo," there's your answer. And as much as I'd like to take a day off and heal up before appearing on national television, MS just doesn't work that way. I'll take it from your lack of response to my MUCH shorter--and still very civilized--response than this one below your comment that you have been sufficiently placated. Oh, and no apology necessary.