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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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!

But what about the children?

When I asked people what they wanted to hear about through this blog restart, I had a few people mention that they were curious about what to tell their kids (i.e. how to raise their kids to not be assholes). First of all – kudos to you for actually caring…addressing the issue at all is the first step in raising cool kids! I also love this because there are so many misconceptions about what is and isn’t acceptable to say to a person with a visible disability. I think before I dig into this there are two important things to note:

  1. I am not all-knowing, and I don’t speak on behalf of everyone with a disability. What I think is acceptable may not be what other people in wheelchairs think is. Use common sense, and if someone is in the middle of a conversation that might not be a good time to send your kid over to ask a question!
  2. What is acceptable from children varies by age. If I see a 3 year old gaping at me I’m much more likely to be friendly – if there’s a 14 year old staring at me slack jaw he will definitely be on the receiving end of my laser eyes.

One thing my parents and I have always commented on is how quick people are to tell their children not to ask questions. Please don’t do this! I know I have a disability and your child won’t be drawing attention to anything I’m not already aware of. One of the best things about kids is how open they are to learning new things. I would much rather explain to a 4 year old that I have spinal muscular atrophy and what that means than have a 35 year old stop me in the hallway to tell me his 2nd cousin has spina bifida as if that somehow makes us friends. Encourage your kids to ask questions and you’ll see that most people are happy to answer and educate!

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Of equal importance – please don’t give your children a reason to fear someone in a wheelchair. When I go by don’t say “watch out – she’ll run you over!” I have been using an electric wheelchair for 20 years…if I run you over it is intentional because you say stupid shit like that. There is a very good chance your child will have interactions and maybe even relationships with people with disabilities, and they should feel comfortable with “us”, not afraid for their toes.

Lastly, teach your children that a person’s wheelchair is a part of them. Discourage them from touching a stranger’s joystick/buttons/wheels (good advice for most motor vehicles, really). Not only could that be potentially dangerous, it is also an extension of ourselves. Don’t let your kids grow up to be the people who use the wheelchairs of people they just met as coat racks. Seriously, it’s not cool.

Basically, and I know this is a foreign concept, but treat people with disabilities as people! Age appropriate questions and curiosity are more than welcome. I’m hopeful that by removing the stigma around asking persons with disabilities for more information and by creating an open dialogue, the next generation of people will be more inclusive!

 

You’re fired

You know those shirts that say “I run better than the government”? I need one. And I can’t even walk. If I did my job as poorly as any given government agency, I would have been fired years ago.

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This past Saturday I received an envelope from the Department of Health and Human services, which is never a good thing. Inside was a letter telling me I had been deemed ineligible for MaineCare services. MaineCare, Maine’s version of Medicaid, is the only insurance carrier who covers Personal Care services. That means that private health insurance – like what you receive through your employer – wouldn’t cover it (which is a topic for another post). Because of the income limits on Medicaid, that means many people with disabilities have to hover around the poverty line just to get the care they need. Some states offer a “Buy-In” plan, which means that those with disabilities who make “too much” can pay a given amount to remain on the state insurance.

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What the government thinks people with disabilities do

One of the easiest ways to qualify for MaineCare is to receive SSI (Supplemental Security Income), which is given to any number of groups who qualify based on ability to work, and income. Because I make “too much” (trust me when I say it’s not that much), I no longer am eligible for SSI to help me cover my extra disability expenses associated with maintaining employment. When I found out I would likely be found ineligible for SSI, I confirmed with several people at both the Social Security Administration and DHHS that this would not affect my MaineCare services which I rely on for both health insurance and my personal care needs. I was told that it would not.
What I was not told was that I needed to fill out new paperwork to determine my disability status. I was not told that I would have to return paperwork to ensure I was disabled (despite filling the same paperwork out probably 10 times over the last 8 years) in less than a week or else I would lose my medical coverage. I was not told that I would receive a letter telling me I was ineligible, or that that letter wouldn’t include any explanation as to how that determination was made, or that that letter would have nothing but a link to the Health Insurance Marketplace – a marketplace full of insurance carriers who don’t offer anything that I need. I was not told that I would have to spend my Monday morning repeating my social security number over and over again as I was transferred from department to department to figure this out.

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A representation of what it feels like every time I call a government agency

In any private organization, somebody would be held accountable. But this isn’t a private organization – it’s the government. So really, I expect nothing better.

Being scared isn’t a bad thing

I’m always pretty open on social media about my disability. I mean, I can’t really hide it. I talk about lack of public access, or funding problems, or not being able to open jars and Pop-Tart packages. But one thing I don’t address publicly very often is that having a progressive muscular disease can be pretty damn scary.

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This cat doesn’t have thumbs and can still open jars better than I can

I don’t talk about it a lot because, truth be told, I don’t think about it all that often. It doesn’t affect my day to day life, and usually the progression is slow enough that I don’t really notice it until suddenly I can’t do something I used to be able to. I generally don’t think about the fact that I could be one illness away from losing the ability to independently breathe overnight. Whenever I say things like that I feel like I’m being a fatalist or morbid but the fact of the matter is it’s just the reality of the situation. Avoiding the topic isn’t fair, because it’s okay to be scared and it’s okay to let others know you’re scared – we all feel it sometimes, and it doesn’t have to be disability related.

I have been so blessed with friends who are willing to share the burden with me. I may get scared but I never feel isolated. I met my best friend when she was 15 years old – and let’s be real, what 15 year old girl wants to deal with doctors appointments and talking about how a common cold leads to pneumonia? None of them. But she did, and over the last 6 years she has been through so much with me that I’m surprised she sticks around. This goes for all my friends. Last night when I told them I was nervous about an appointment today, all of them offered to drive and go with me. Not out of guilt or pity, but because they knew I would do the same thing for them.

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If I could offer any advice to anyone – disabled or not – it’s to build a support system. Surround yourself with people who you can discuss your fears and weaknesses and insecurities with, and make sure they can discuss theirs with you. There should be no shame in being afraid of things, and I’ve found that more often than not talking through the things I’m worried about with someone close to me can calm me down enough to start thinking more clearly instead of spiraling into an anxious mess.

Sorry for the heavy Thursday morning post…but at least tomorrow’s Friday?

The purest love

If you ask just about any dog lover what it is that they love so much about dogs, they’re practically obligated to mention the phrase “unconditional love”. Unlike most things – although I might be biased – I am inclined to classify this as fact, not opinion. Even puppies who have been raised in abusive homes are known to try to protect the very humans who hurt them. 
  
Naturally, this is important to anyone. It is human nature to want to be accepted and loved. As a person with a disability I will take that one step (tire rotation?) further. No matter how great my support system is – more on that later – there will always be parts of my disability that are inconvenient to those around me. Do you know who has never cared even one bit about my disability? My dog. Actually, any of my dogs. I’m pretty sure it would be literally impossible for them to care any less – and that is an amazing feeling. 

  
Growing up, even before I used my wheelchair full time, I had a dog. He adjusted very quickly as I moved from a manual wheelchair to an electric chair; some might see this as an anomaly. I thought so too…except my post-high school roommate’s dog, who didn’t grow up with wheelchairs, never had an issue with it either. In fact, without much coaching she learned to place her front paws on my lap so I could easily pet her. Everyone I knew was blown away by the fact that my brand new Pomeranian puppy taught himself to ride around on my foot plates. I thought somehow this made him special…except my new chihuahua puppy taught himself the same thing. To them, the wheelchair wasn’t odd or inconvenient; it was just part of the human who they loved so much. 

  
The fact of the matter is that there’s no human that could ever be as selflessly loving as a dog. It’s not in our nature to overlook “flaws”; it’s something that we generally have to work towards. Dogs, though? We don’t deserve dogs…but I’m sure glad we’ve got ’em. 

  

  
Side note: Basically this whole post was an excuse to share pictures of my dogs…because, well, dogs. 

How my mattress changed my outlook on life

One of the things doctors won’t tell you about having a mobility disability is that you won’t sleep. You will be tired all. the. time.  For most of my life I have woken up at least 4 times a night – sometimes more – to reposition. That means that, like an infant, I was waking my parents up several times a night just to help me out. I’m 24 – that is not cool fun. I had just accepted this was how it had to be. I can’t move myself, so of course someone had to help me, right? My parents both suggested that I try different mattresses but I was so convinced that it would never get better that I didn’t bother trying. Well, as much as it pains me to admit it, they were right (just don’t tell them I said so).

A few weeks ago while I was in the midst of whining about my back hurting, my dad insisted that I look at new mattresses again and pick one. I don’t know if you believe in fate, but if you don’t I’m about to make a believer of you: after years of putting off purchasing a new mattress, the Sleep Number bed I was looking at was on sale for just 2 more days after I decided to try a new one. Seriously, God? Thanks for the discount. After trying the mattress at the store, we ordered it in hopes that it would relieve at least a little of the pain I was suffering every night and hopefully allow all of us to get a little more sleep.

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But actually my sleep number is 35, just FYI

Since my bed got here, I have only woken up to reposition 1-2 times a night. Is that ideal? No. Would it be great to sleep through the night? Obviously. Is this much better than waking up every 2 hours? Absolutely. Especially after years of thinking that I was doomed to never get a restful night’s sleep for the rest of my life…because that is not a fate that I’m okay with.

So basically what I’m saying is that if you’re in a situation that is not where you want to be, don’t accept it. Many (not all) life changes are in your power and it is up to you to make your life – and your sleeping situation – into what you want it to be. It might take some trial and error, and you may have to admit you’re wrong sometimes, but sometimes being humbled isn’t such a bad thing after all.