Discrimination is in the details

After the past few weeks I’ve been wanting to clarify something: discrimination does not always mean being told you can’t do something because of your disability/skin color/religion/etc. In fact – its normally much more subtle, and it doesn’t even have to be intentional. Generally I tend to be pretty forgiving of “accidental” discrimination which occurs only because the guilty party doesn’t know any better. I only become enraged (and boy do I mean enraged) when the same person is a repeat offender, despite having their mistakes brought to their attention. In order to help you avoid joining the list of people who I have written off as hopeless causes, I’ve written some examples of not-so-blatant discrimination based on disability below.

  1. Having a business without handicapped access

I don’t care if you have been “grandfathered in” with regards to the ADA. Just because your business is too old to be required by law to have handicapped access doesn’t let you off the hook. There are some cases (such as a restaurant local to me) where adding access would be an unreasonable cost for a business to be expected to take on. Then, and only then, will I refrain from telling everyone I know not to patronize your business. If you have the option to become accessible and choose not to then your willful ignorance is fair game.

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Choco-Latte, a business in Bar Harbor, Maine whose idea of wheelchair accessibility was putting a step at the top of their ramp. They’re in my Burn Book now.

2. Putting handicapped seating separate from the “general population”

I have been to a few concert venues where handicapped seating is a completely different section from the “normies”. I try to be understanding because hey, at least they have a handicapped option. But its *current year here* and that’s no longer an excuse. I’ve had enough of the segregation and you don’t get a pass just because you tried.

3. Organizing a group activity that is not accessible to everyone in your group

If you are a teacher, a manager, or coach, you are required not only by the ADA but by basic moral compasses to provide reasonable accommodation. This means that if you organize a group photo for your class you need to accommodate the physical abilities of all students with diagnosed disabilities. If you organize a corporate team building event you are legally and ethically obligated to ensure it is something that every employee can participate in. This is not only the “right” thing to do, it is legally required under the ADA. If you are someone in one of these positions I can almost guarantee that the person with the disability will not be mad if you ask them what they need! It’s better than assuming, because you know what they say about that…

These are three pretty common things I’ve run in to in my life that I would like to think are fairly avoidable. I can assure you that never has someone who owns a business with no ramp come to me and said “you can’t shop here because you’re disabled” – but they didn’t have to. The lack of access spoke volumes. If you have any other examples that you see in your daily life I’d love to know them, maybe I’ll throw together a Discrimination Vol. 2 in the next few months!

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Friday Favorites – Manhunt: Unabomber

I’ve always had kind of an obsessive personality. If I like something I want to know absolutely everything about it. I was seriously distraught when IMDB took the message boards off because I used to spend hours reading through discussions about shows or movies I had just watched to see what other people thought – and why. I figured I’d start a stereotypical “Friday Favorites” series as a way to chat about whatever tv show I’ve been binging!

Last week Alex and I made it through the entire Manhunt: Unabomber series and oh. my. God. He and I both REALLY value our sleeping time so to let a show cut into it is saying something. It was almost painful when we had to stop for the night because 4:30am comes quick. As a huge Criminal Minds fan I guess it shouldn’t surprise me that this was right up my alley but after trying Mindhunter and hating it I was a little nervous to waste more time on a bad crime show. Trust me when I say my time was NOT wasted.

I’ve heard about the Unabomber growing up but truth be told I knew very little about him – what, when, and who. I’m a serial killer junkie and my favorite part of Criminal Minds has always been the process of behavioral analysis, so seeing the (albeit dramatized) behind the scenes work on a real case was LIT. Mindhunter tried to go for a similar feel but honestly the acting in that show was some of the worst I’ve seen in years.

Paul Bettany as Ted Kaczynski was chilling. I’ve been a huge Bettany fan since I saw him in Wimbledon when I was 13 but his character in this could not have been any more different. He really sold the role and made it hard to hate him. The show also really delves into mental illness and the complexity of a serial killer who is so sure they’re doing the right thing.

If you have any interest in behavioral analysis or in watching Sam Worthington do some linguistics magic (it’s as hot as it sounds) I would absolutely recommend dedicating the time to this. It’s not an easy watch so I wouldn’t suggest this as background noise…take it as a good excuse to curl up with your husband/dog/cat/glass of wine and binge this until you’re convinced you, too, could be an FBI profiler!

A Sad Stat – Employment with a disability

A blogging lifetime ago (read: two years) I shared about the struggle of maintaining employment while still receiving the benefits I need. But let’s say you get past the income limits and the technical barriers of finding transportation and – let’s face it – the energy to maintain a full-time job. I’ve seen a pretty large number of my friends with disabilities share their concerns they have with finding and maintaining employment and earning the same respect as their able-bodied colleagues.

These fears are founded in a very scary reality. In 2016, the Bureau of Labor Statistics reported the unemployment rate for people with disabilities at 10.5%, over double that of people without at only 4.6%. Many factors play into this: lack of access to education and careers is a huge one. However, there are several smaller, more manageable things that people with disabilities can do to make their job search more fruitful. I consider myself extremely lucky to work at a job I love, and truthfully wish everyone was as fortunate!

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What is this “dream job” I speak of? I work at Bath Iron Works – the world’s best shipyard. Photo by Josh Gerritsen

While I can’t create your dream job, I can share some of the things I did during the hiring process that I like to think helped me land the job. Some of these are disability specific, but overall I think they’re pretty good advice in general.

  1. Be upfront about your weaknesses

I chose to disclose my disability in my cover letter. There’s some debate in the disability community about whether this is the “right” way to do it but I (sit) by my choice. By disclosing my disability, I opened a dialogue and also demonstrated that it was not something I am ashamed of or try to minimize. Spinal Muscular Atrophy is very much a part of who I am – it has given me a skill set that I never would have otherwise developed. Addressing the elephant in the room also meant that I wasn’t going to catch the interviewers off guard when I got there. The interviewers would (ideally) have had time to process and adjust to the idea, so the interview itself could focus on more of the job-related issues.

2. Be confident

Don’t let your preconceived ideas of how the job market looks as a person with a disability affect the way you go into your interview. My mom will tell you that, as a general rule, self-confidence has never been something I lacked. A lot of this comes from the whole “fake it till you make it” technique – tried and tested. I have never let the fact that I’m in a wheelchair detract from my other skills. I may use self-deprecating humor to address it (“what’s your greatest weakness?” “I’d have to say stairs”) but my family has never let me forget that I have a lot of skills not at all impacted by my SMA.

3. Don’t volunteer more than is needed

Having been at my job for a little over a year now, things have come up that require accommodations that I hadn’t considered – because I hadn’t tried to. If you’re capable of performing the basic job functions with only reasonable accommodations then those can be addressed after you’re hired. The ADA is there to protect you…don’t bring up too many “what ifs” during your interview or in follow-up conversations. My current job may not have hired me if I had mentioned all the things I needed help with (electronic textbooks, elevator door renovations, additional handicapped door buttons, etc), but I like to think that the quality of work I do makes it worth their time.

I’m not a hiring manager, or someone who has been to hundreds of successful interviews. My word isn’t gospel, or even backed up by all that many life experiences, but I do hope that at least one of these points gives you some confidence going into your next interview. If you have any other tips, feel free to drop it in the comments!

#cripplefriendly – Makeup Edition

I won’t start this by pretending to be a beauty blogger – there are enough of those who are way more knowledgeable than I am. But what I do know is that my disability has it’s tendrils in every aspect of my life and that includes makeup application. Most every woman who uses makeup is limited by skin tone and type (and budget) but I’m lucky enough to also be limited by my own range of motion. A lot of foundations are hard to apply, and a lot of exfoliators are difficult for me to use. This post might be more relevant to my fellow crippled beauties, but if you’re curious about my every day makeup routine then this will give you some insight!

Starting with skincare:

I’ve neglected skincare for most of my life, partially because I didn’t know where to start but largely because a lot of products are difficult to manipulate and would have required me to ask someone for help which I hate doing for non-obligatory things like this. Recently I discovered a brand that not only offered great products for my sensitive skin, but also products I can apply and utilize independently. I use the First Aid Beauty Radiance Pads twice a day and it leaves my skin extremely smooth. I’ve also spent almost a decade with extremely dry skin and now, using the First Aid Beauty Ultra Repair Cream only at night I maintain hydrated skin even in the winter.

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Why they’re #cripplefriendly:

The Radiance Pads are small, lightweight, and don’t require me to use a sink or a washcloth. I can leave the jar on my table and access them on my own. I also don’t have to apply a lot of pressure for them to work.

The cream is soft and the jar is fairly easy open, and again the fact that I don’t need a sink or any kind of cloth to use it makes it possible for me to apply on my own.

Foundation:

I’ve been on the hunt for a good full-coverage foundation for years. Up until a few months ago I was using the Makeup Forever HD Stick because the stick made it easy to apply but the coverage wasn’t great and it didn’t last me a full work day without getting sticky. After trying several high end foundations, I’ve fallen in love with Estée Lauder Double Wear foundation. It’s full coverage, matte, and it lasts all day with a really pretty finish.

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Why it’s #cripplefriendly:

The bottle doesn’t come with a pump (which I can’t operate) so I can dole just a small amount of product onto the back of my hand without asking someone to pump it for me. It is a very liquid foundation and so it blends out very easily using my foundation brush.

Brush: 

Any and all oval brushes.

Why they’re #cripplefriendly:

For a typical foundation brush, I need to be able to get my hands all the way up to the top of my face to blend out my foundation (or any product). By design, the handle of the oval brushes gives me an extra few inches of reach – meaning I can blend without exhausting myself for the day.

Brows:

Anastasia Beverly Hills Brow Wiz (in Taupe, waddup).

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Why it’s #cripplefriendly:

Both the pencil end and spoolie end are easy open and close, which saves me some resources. It’s also an easy-twist pencil, so I can work the whole thing on my own!

This is just a brief look at my makeup collection – if there’s any interest I can definitely review some of my #cripplefriendly (and not-so-much) makeup products and clothing moving forward! For my fellow makeup lovers, do you have any products you love? And do you think they’d make a good fit for someone with a physical disability?

Is 1 better, or is 2 better?

I think if I had to choose the single hardest aspect of being disabled, it would be the absence of choice in my life. I find myself being extremely jealous of friends of mine who have the option of choosing between multiples doctors, or mechanics, or apartment rentals. Most of my decisions are narrowed down to two choices before I even realize I have to make the choice at all.

Don’t get me wrong – I am extremely grateful for the home we’re renting and the life I’m living. But in the back of my mind there’s always underlying stress about what I’ll do when this house is no longer available. We’re a DINK (dual income, no kids) family – without getting tacky and getting into the specifics of our finances, Alex and I make enough that we should have at least a few options within an hour of our jobs that we could consider renting. However, living in a rural area of a rural state, the house we’re in is one of about 3 total that we found in our several months of searching that I could actually access. It’s not an upstairs unit, or up a flight of stairs just to enter the apartment building. There’s no “quaint” front porch…with 3 steps leading up to it. I’m not paying for a whole house, just to know there’s half a house I’m paying for that I’ll never see because its upstairs.

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My cute ass house with no steps
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The view from my cute ass house

People have asked me what some aspects of my daily life that they don’t think of might be. Ask any of the coworkers that I attend class with and they’ll be able to fill you in on the struggle that is finding a mechanic to work on my van ramp. There’s only one company certified within 2 hours of me to work on it. That means no second opinions, even when they’re not making any headway on a problem I’ve had with it for years. That also means taking a day off of work to get my car looked at, because I don’t have the option of getting in a friend’s car for the day.

Little things like these can add up, and sometimes I feel guilty because I often feel like I’m not 100% present during any conversations or interactions I have with those around me. I spend the majority of my mental energy trying to prepare for the next problem that will come up and force me to create options where there aren’t any available. This (combined with my dad constantly pushing me to solve my own problems) has made me better at thinking on (off?) my feet, which has helped me get where I am today, but that doesn’t mean it’s always fun.

In the mean time, if any of you are looking to get into specialty mechanic work, I’ve got a van for you to start on…

The truth behind Twitter

Social media gets a pretty bad rap, understandably. With things like the Tide Pod challenge trending it can be hard to see through them to the benefits that outlets like Twitter and Instagram and even Facebook offer. I credit social media with not only bringing my boyfriend and I together (a story for another time), but also for the person that I’ve grown into be today.

The first few years after high school were extremely difficult for me emotionally. Watching all of the friends I had known for 10+ years get to start a new adventure and make new friends away at school while I was still living at home with my parents – largely due to things out of my control – sent me into a little bit of a downward spiral. I joke a lot about how badly I did at the first 3 colleges I attended but truth be told my mental health was really suffering and that played a huge role.

Then, I discovered Twitter. Even though most of my “real” friends had left and moved on, there was suddenly this huge pool of people who shared my interests and my opinions. Even when we didn’t see eye to eye I was finding people who were genuinely invested in me. People who supported and understood my struggles rather than judging me for not following the typical path. I joined Twitter in 2013 and since then my confidence has grown in ways I never thought possible. Some of this comes from growing up, but a lot of it has to do with being “surrounded” by people who I know I can reach out to at any time of day about anything.

I get messages from people who I’ve never talked to telling me how much sharing about my disability has opened their eyes, and people with disabilities who tell me how glad they are to read that I’ve dealt with many of the same things they have. Growing up in a very small town can be isolating, and while social media definitely comes with its own risks I credit it with helping me realize that I can be my truest (and boy, do I mean truest) self and people will still appreciate me for who I am, disability or not.

I’ve invited friends from Twitter to birthday parties and birthday dinners. One of my good friends – who I had never met – showed up to meet me and my parents in Boston and it was like having a distant cousin at the table with us. Of course there’s more to Twitter and IG and it can be a mean, dark place because it is full of humans and there are a lot of bad ones, but I like to think there are more good than bad on Twitter and in real life. It is about who you choose to surround yourself with…the internet just gives you a bigger pool to pick from!

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If, after reading this, you decide you want to follow me and find out more about the community I’ve become a part of, check me out at @mclyndaaa

Quiz: Am I a disrespectful asshole?

The other day I wrote about raising kids to respect persons with disabilities – and their wheelchairs. I also made reference a few times to “asshole adults” and how important it is to not let your child become one. I think now is an appropriate time to address some characteristics of an asshole – and how to avoid that fate.

☐ I have started a conversation with a person with a visible disability by asking “what happened to you?”

If you have done this, you might not be an asshole but you definitely need a course on human interaction. Try the school Ted Cruz went to, he had most people convinced he was not a reptilian.

☐ I have asked someone other than a close friend how they perform basic intimate daily tasks (such as bathing, using the bathroom, and – my personal favorite – have sex)

This is just common sense. If you wouldn’t ask it of an able-bodied person on a train, you probably shouldn’t ask it of a disabled person…anywhere. But especially not in public. Get it together.

☐ I have assumed that a disabled person knows my 2nd cousin’s wife’s neighbor, because they also have a disability (that may or may not bear any resemblance to the person in front of me)

Well, Deborah, my grandma’s cat is a socially inept bitch too, do you know her?

☐ I have hurried out of the way or tucked my feet an inappropriate amount out of the way in a hallway wide enough for a pair of elephants to walk through, upon seeing a wheelchair headed my way

People in wheelchairs are as good at driving their chairs as most people are at walking, sometimes even better. If we run over your toes or hit your shins it’s because you were being an idiot who needed to be corrected.

Along this same vein, comments about how good we are at driving our chairs, jokes about needing a license, and telling those around us how “zippy” we are is overplayed. It’s worse than 2010 Ke$ha.

I have used the wheelchair of someone I just met as either a coat rack or a piece of furniture to lean on

This one I tend to be more forgiving. It does get irritating when I try to move and take up more space than I’m used to because of a jacket on the back of my chair, but I also understand that carrying a coat around can be a pain. A good rule of thumb is to ask permission before doing anything involving someone else’s property.

If you have checked any of these boxes…you’re not an asshole. I know, because you’re reading this in an attempt to educate yourself. Nobody expects perfection, especially when it comes to new territory. Just be mindful, and when in doubt err on the side of basic respect!

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