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:
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!
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!
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!
As a sibling who lives with her much younger brother, I find myself constantly amazed (and not always in a positive way) by the new curriculums being taught in schools. New methods of math, countless hours of standardized testing, and, at least at my brother’s school, the replacement of the word detention. Although I don’t agree with these things, I can tolerate them. One thing I can’t tolerate is willful ignorance.
My mom shared a letter with me from my brother’s school – my alma mater – saying that the 6th grade curriculum would no longer include a Holocaust unit. Not just any Holocaust unit – one taught by a teacher who’s been teaching it for over a decade. Who’s won awards for it. Who’s put their heart into teaching this sensitive subject to a class of 11 year olds with a grace and respect that most couldn’t.
Why has this unit been removed? Why would a school take this award winning unit away from its students? Without getting into the details of how the school officials arrived at this decision, which has been 3+ years in the making, it’s because one family was made uncomfortable. That’s right. The parents of these two children decided that their children’s discomfort with genocide (news flash: genocide isn’t supposed to be comfortable) was more important than every other student’s right to learn about the Holocaust. They threw enough of a fit that the school administrators decided to cater to one family rather than support a veteran and talented teacher. Because of one student’s lack of ability to process the real world, kids like my brother will no longer have access to the award winning curriculum.
This kind of thinking is creating a generation of kids incapable of empathy. Why should we not teach about the Holocaust? In high school, I don’t remember thinking I was too scarred by the Holocaust unit in 6th grade to carry on with my life. I do remember thinking that it was unfortunate we didn’t learn about the more recent genocides – in Rwanda and Darfur – that people in our parents’ generation could have done more to prevent if more people had even known about it. Many kids my age don’t even know about these genocides which happened less than 30 years ago. Maybe it’s too uncomfortable to talk about? Maybe they prefer living in the cozy, small town bubble too much to think about something as upsetting as genocide a half a world away.
Furthermore, why should we allow a handful of students’ unease dictate an entire curriculum? While he may be privileged enough to never have had to learn to process horrific things in his 11 years, this could have been seen by his parents as a teaching moment – a chance to learn how to be empathetic to problems that don’t directly affect you. Instead, it was used as a way to teach this child how to shut out everything bad. There’s a term for this: sheltered. How can a child who has been sheltered ever be expected to go forth in the world and improve it, if he refuses to acknowledge its even broken?
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.
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.
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.
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.
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.
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.
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?
When I did my first “How Do You Do It” post, I had no intention of making it a blog series. Honestly I didn’t really feel like I had all that much new to offer. But, I love making lists and using GIFs, and it turns out I actually do have some cool skills I’ve picked up through my years of being handicapped.
One of these skills is being able to ask for what I need – whether it’s a glass of water or proper medical care. This is something that I still struggle with, and I think most people do regardless of physical ability. Below are a few things I’ve determined to be helpful. 1. Determine whether you actually need it
It can be hard to confidently ask for something when it is something you can do without. My life is a lot of weighing my choices: Will the person doing this for me be more uncomfortable than I currently am if they don’t do it? If the answer to that is yes, I generally don’t ask for it or will wait until it’s a little more convenient. Which brings me to point 2.
Asking for a drink of water right after someone has gotten back from being in the kitchen is not a great call. I was awful at this as a kid, mostly because I was awful at #3.
3. Planning ahead
If I know that I’m going to need a ride somewhere in three weeks, I try my best (though I often fail) to ask people ahead of time. This gives them the opportunity to shuffle their plans, or tell me they can’t help without feeling guilty.
4. Be confident
This mostly comes into play when I’m advocating for myself with doctors. After 18 years of dealing with my disability, I can confidently say that I know more about it than the doctors in my area – through no fault of their own, it’s just the way the cookie crumbles. Because I am so confident in this, I know that I can ask for exactly what I need and don’t have to take “no” for an answer. It makes it easier to ask for what you need if you’re confident that you know what you’re talking about!
5. Explain the end goal
It’s great to ask for help in achieving just about anything, but if the person you’re asking for help doesn’t know what you’re trying to achieve they may not be able to help you! One example of this that comes to mind is when I ask for help repositioning in my wheelchair. My dad always gets frustrated with me because my go-to sentence is “Can you move me?” How much good does that do? It’s much more useful to say “My hip is hurting me, can you help me move so I’m not putting pressure on it?” It makes it easier on everyone.
This isn’t strictly a disability problem – the more specific you can be the more quickly you’ll be able to work with someone else to get what you need!
Hopefully even if you’re not disabled, this was helpful. People really do want to help – you just have to be willing to ask!
Today’s my daddy’s birthday, so when you’re done reading this be sure to go wish him a happy b-day!
The real point of this post, though, is a thank you. Some of you may not know this, because really in the scheme of things it’s fairly irrelevant, but my dad is actually my step father. I set him up with my mom at my first “wheelchair party” when I was 4, and then was a part of their wedding when I was 7. But really, he’s the only man I ever have and ever will call my dad.
It’s pretty uncommon to find a young man (well, he was young at the time) who is willing to date a single mom. I’m pretty sure that “must have a child” isn’t usually on the list of must-have qualities in a future partner. But a man patient enough to date a single mom to a child with a disability? That’s like finding a unicorn. My dad’s a really smart man so I can’t imagine he didn’t know – to some extent – what he was getting into. He was signing up for hospital stays, medical expenses, and helping with personal care for a daughter who wasn’t really his – all while working a full time job.
I’m not saying all this for y’all to pity him, or to make our life sound terrible. I’m writing it because he would never complain about the extra work, and there isn’t a day that goes by that I’m not appreciative for all my dad does for me. He never makes me feel like I owe him anything – even after he’s worked an 11 hour day, and then has to help me take a shower during the little downtime he has. He’s so patient and, although like all families we have our problems, my parents, brother, and I all live a fairly “normal” everyday life.
So, happy birthday Daddy! I hope you had a good day shopping for vinyl records like the old man you are!
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.