What does “Ableism” mean to me?

Ableism (officially means)- a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities. But what qualifies anyone to asses these “practices and beliefs”? How has it that ableism has gone unchecked for SO long? This is more than just discrimination against disabled individuals, this is about able-bodied people going out of their way to find fault in our disabilities.

It may not seem like it, but one of the worst forms of ableism is unwanted/unsolicited help. “Help” is a very vague term; sometimes it can mean physically helping someone with a difficult task, this is not the kind of help I am talking about (although there are cases it can be the case). I’m talking specifically about the times that able-bodied people suggest they are helping someone with a disability by giving them “advice” (whether we want it or not).

Let me make this VERY clear… not ONE case of invisible illness is exactly the same. NOT ONE! So, we don’t care if you know someone else with our condition that magically got better (insert enormous eye-roll here), or if you read an article one time that said if we did……. all our pain would disappear. You’re not helping! It’s ableism, whether you are meaning to or not. You’re assuming to understand how we feel, but you don’t, you can’t.

So, how does this factor in to the official definition? Perfectly, that’s how. Unwanted/unsolicited advice is both a belief and practice (on the part of the advisor), because they’re assuming the disabled person does not have the ability to properly care for themselves. When in fact, most people with disabilities are significantly more versed in their illness than most doctors (not necessarily specialists, but it can feel that way sometimes). When anyone without disabilities suggests that they “understand” what we’re going through and offer advice for potential cures, it is like a knife in the back! Unless you are my doctor… I don’t want to hear it!

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Another significant issue is people asking if we’re feeling better. No, we’re not and that’s a horrible question! Better than what? Better than when? We’re used to the common “How are you feeling?” it sucks and we have to lie every time, but at least we have an answer for it. Some of us completely lie and say “I’m ok” or “Good”, others say “Fine” and leave it at that. Personally I’ve found that saying “I’m here” is a good way to stop the conversation, without making anyone too uncomfortable. But when someone asks “Are you feeling any better?” I cringe! It’s ableism to assume that I will get better at all. “But don’t you WANT to get better?” I do, of course! But I have an incurable disease… this is not up for dispute. Think before you speak.

If we want to complain, we damn well are allowed to complain! If any able-bodied individuals out there think differently, see ya. Does this mean no one else can complain about anything else, of course not! But do NOT compare your headache to my chronic migraines. Never compare your back pain to my dislocated ribs and curved spine. Don’t say “I know how you feel” until you’ve been diagnosed with something comparable. Period.

I’ve been a little harsh today, more so than usual, but for good reason. The disabled community deserves to be heard and have our rights upheld! Let’s put an end to ableism!!!

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Fear and Loathing… in the World

Fear is like a lie. It might start out small, or insignificant. But once another lie or fear rests on top of the other, a cycle is formed. It’s like trying to fix a hole with scotch tape, you have to add more and more. But in the end, all you’re doing is making the problem worse. Those layers will eventually be stripped away and reveal the damage done.

The opposite of fear is not courage, it’s knowledge.

We’re facing so much fear in our world right now. Fear of what we don’t understand, fear of other cultures, fear of brutality and even death. What would happen if education and understanding took it’s place? What if people took a step back and said “I choose not to be afraid of the things I don’t know, or can’t see.”

I have seen it so many times! Bullies that push people around, just because they’re afraid of what other people will think if they didn’t. Abusive partners, fearful of being alone, lashing out and trying to force love. Disabled citizens that choose not to park in the handicapped spot (even with a placard), out of fear from threatening notes and harsh stares. People afraid of their sexuality, because they’ve seen how others were treated. Young men that fear police brutality, and honest police officers that fear retaliation (for the actions of others). Refugees without a home or food for their family, fearful of what the future holds. A world in fear of war, torn apart by the deeds of a select few.

“The enemy is fear, we think it is hate; but it is fear.” – Gandhi

I am in NO WAY condoning the actions of bullies or abusers! Fear is not a justification for misdeeds and actions. This is all about opening our mind to what the real problem is!

Some people might ask, what qualifies me to write about this? I write a blog for people with disabilities and invisible illness. What does this have to do with that? To those people, I would say this… I may not be a scholar or civil rights activist, I may not even have it “right”, but I certainly feel like the way were going is wrong. I live every day in pain, I work tirelessly to advocate for myself and others with chronic illness. I have seen how fear can grab a hold of a person and make them want to just give up. My own fear has brought me to the brink of death; and yet it was the fear of leaving my children without a mother that brought me back. I have loved ones in law enforcement that I fear for on a daily basis, and I see how much pain they go through every time there’s news of another shooting. I am not here to say one group is better than another, I am here to say that until the cycle of fear is broken, we will never heal!

“The only thing we have to fear, is fear itself.” – FDR

Education is key! I’m not just talking about kids in the classroom, I am talking about unbiased news reporting honest headlines. I’m talking about flooding the internet with true stories, from the voices of those going through it. Muslim and Christian leaders, coming together and having civil conversations. Accepting that yes, Black Lives MATTER, without (even once) thinking that that means other peoples lives do not. Taking a step back, realizing that any time you say “all of this one particular group is…” is not productive and feeds into fear! This includes police! Not all police are racist, or are out to hurt anyone. They’re afraid, just like everyone else, and (unfortunately) some of them can’t handle the fear. Knowing all this can be the best deterrent to violence available.

We CAN break the cycle of violence, and the fear that drives it forward! So, even if you haven’t taken my words to heart, at least listen to one of the wisest beings in the universe…

“Fear leads to anger… anger leads to hate… hate leads to suffering.” – Yoda

Sometimes the Pain is Just Too Much

So, it’s been a few weeks since my last blog post and I apologize for that. I have had a lot going on in my personal life, but more than that, I have been suffering. I’ve tried to do too much and my body is reminding me why that’s a bad idea. I’m tired. I get a lot of rest, but I’m physically, emotionally, and spiritually tired.

This week is my husband’s 40th birthday, and I wanted to make it special. We don’t celebrate our birthday’s. We have kids… they get parties, not us! But for his 40th, I wanted it to be different. So I set up a very small surprise party, just close family and a fun theme (Lord of the Rings, “Over the UnderHill”). I thought by keeping it small and not going crazy with decorations, I wouldn’t be over-doing it. I was wrong. I’ve spent the last few days practically bed-ridden. It was a fun party and he was surprised, but I have a feeling my days of party planning are over. Which is tough for me, as I LOVE to plan parties! Things may be different once I get my electric wheelchair, but I just don’t know yet.

I also had my 20 year high school reunion a couple weeks ago. It was quite fun and I’m glad I went, but (once again) I over-did it. I took a manual wheelchair (as an electric one was too expensive to rent) and my arms were killing me by the end of the night. Also, the back of my legs hurt horribly! How do people sit in those things without thick cushions? Now I know better! Add to that travel time in the car and sleeping (well, attempting to sleep) on an unfamiliar bed, it was another several days before I “recovered” from that trip.

I’ve started several blog posts within the last few weeks, but nothing has felt “right”. I’m not sure why. I wish I did! As many of my followers know, pain is so much more than just physical distress. These past few weeks, I feel like my pain has engulfed me. I hate that feeling. I’m supposed to be the one helping people through their pain, not hiding my head in the sand whenever I struggle with it myself. But the reality is that I have chronic pain, I’m going to have days and weeks like this. I know that! I also know that I cannot let it drag me down.

So, for all of you out there saying to yourself “No one could possibly be feeling this way!” I hear you! I am there with you! You are not alone!

I’m not going to say the cliche answer of “Just think positively and don’t let the pain win.” That isn’t helpful, I know that. It may be a true statement, but it’s not what we need to hear. We need to hear that people are there for us THROUGH the pain! We need to know that our support system believes our pain is as bad as we say it is. Unfortunately, it doesn’t always work that way.

My hope and prayer for you today is that everyone reading this has someone in your life that understands your pain, and supports you unconditionally. Never take that for granted. (((gentle hugs)))

On-line groups… support, friendship, and much more.

For those of us with invisible illness and chronic conditions, Facebook Groups have become a staple! Not that long ago, social networks were not considered a place for support. It was where the younger generation went to connect, share, and play. But it expanded and now allows people from all over the world to come together and find a common ground. Groups are everywhere and can be found for almost every subject. Some are open to everyone, others are closed (requiring an invitation or friend in the group to join), or secret (where the admins has to accept every request to join). Each kind of group can be helpful for people with chronic illness, especially closed/secret groups that tend to become very personal.

But how personal is too personal? Why is it that we find it easier to open up and talk about personal problems to strangers on-line than our friends irl (in real life)? I have a lot of experience with this! Even though I am very open about my pain and illnesses, there are so many times that I want to vent or complain about how much pain I’m in, but the thought of posting it on my main feed just feels… wrong. I’ll look back at my recent posts and see the last time I “complained” and think twice about hitting send. I feel like a burden to my friends and it pains me even more. So I’ve started leaning more and more on my groups for support. These are people that know what I’m going through! They are dealing with the same pain I am, so my venting isn’t an annoyance, it’s an average day to them.

It’s easy to get “hooked” on that feeling of community and join every group imaginable, but I caution against that. I have made that mistake and had some bad experiences. Some groups are extremely supportive and have people in them that offer information as much as they do consoling words. Other groups are all about drama and gossip. They commune under the guise of chronic pain support, but all they do is talk about how horrible people are to them. I cannot stress this enough, don’t allow anyone to bring you down! Whether it is on-line or irl! Venting and complaining is one thing, but if all someone does is make you feel small or unimportant, they are not worth your time. Period.

I’ve made several wonderful friends through on-line groups! These are people that “get me”, they know what I go through on a day to day basis and don’t judge me when I need to let it all out. I also know that they will have practical advice for me if I need it on certain subjects. Do I know for a fact that if I had known these people irl, that we would have been close? No, of course not. But I know we are now, and that’s all that matters.

Some advice I would give if you’re thinking about joining an on-line support group. Contribute. Contribute. Contribute. Don’t feel like you have to be a spectator, unless that is where you feel comfortable (especially at first). But the more you contribute, the better you will feel about opening up and asking for help when you need it. Contributing isn’t just posting images and/or articles. It’s commenting on other people’s posts with some insight that you’ve learned through your personal life, it’s reacting when people say they’re having a rough day, or it’s offering a virtual hug when that’s all you can do for them. You’ll find that your experience with groups will be more rewarding and that it will take less time to incorporate into the fold.

A message to my friends (on-line and irl): Thank you! Thank you for being there for me whenever I need you. Thank you for listening to me whine and moan about every aspect of my life, especially my pain. Thank you for being you!

What Does “Pain Awareness” Mean?

September is Pain Awareness Month. For some people it’s an opportunity to share images that represent their particular chronic illness, for others it’s a chance to research methods of pain relief and their effectiveness, but for most it seems like just another awareness campaign that makes no sense. Well, here’s a little insight as to why it is so very important!

Everyone has been in pain… everyone. Ok, there are some people in this world that have a disorder where they literally cannot feel physical pain, but it is actually very dangerous and they tend to hurt themselves quite a bit (like burning their hand on a hot stove) because they don’t feel the pain. But even they have felt emotional pain. All pain is relevant! Yes, National Pain Month is specifically for physical pain, Mental Health Month is in May, but that is not my point. Stick with me.

Pain goes so much deeper than just the nerves in our skin. When someone deals with chronic pain (and I mean 24/7, all day-every day), it is exhausting. It drains every bit of energy out of a person, and it often breaks down the barrier between the physical and mental pain receptors. This is why the majority of people that have chronic illness also deal with some form of depression and/or anxiety. The longer we deal with pain, the worse it can get. More people with chronic and invisible illness die from suicide than any other complication of their disease.

Pain awareness is more than just saying “Hey look, I’m in pain and you should be aware of that!” It’s saying “Pain is a serious condition and it needs considerably more research, we need awareness/funds to make this happen. My life is hard and I need people to know how hard it is, so that we can keep other people from dealing with the same issues I have.”

That is what pain awareness is, that is what it should mean. Let’s spread the word and make people sick of how much we talk about it! Let’s make sure people know that pain is not something to keep hidden. If you’re suffering and feel like you can’t talk about your pain because you’ll just be branded a “complainer”, now is your time to speak out! Make people aware of the fact that chronic pain is a serious condition that can impact every part of your life. No one should have to go through that alone.

So for September (and beyond), spread awareness and share how pain has affected your everyday life. Make the invisible, visible.

Living in Fear of “The Nothing”

Growing up, one of my favorite movies was “The Neverending Story”. It had everything! Adventure, humor, fantasy, and drama… all rolled in to a beautiful story that revolved around a bullied kid… like me. I think that’s why so many people identify with that movie (and book), because Sebastian was more than just a main character, he was all of us. Even as the story progressed, we find that he represents all of us in our search for meaning in complexities. We work so hard to create situations in our head that are significantly more complicated than they really are, and seeing that depicted on screen (even as a kid) was inspirational.

Then there’s The Nothing. The bad “guy”. The dark force that threatens to ripe apart the world of imagination and free-thinking. How does it work into the picture? The Nothing represents void and loss, it is what happens when people stop believing in magic. Now I’m not talking about literal magic! You can’t fight The Nothing with a patronus spell. It’s about fighting for and dreaming of the future. Not giving up on those around you, or yourself. That is real magic.

In my life I have had to fight many Nothings.

 

So many times being told by doctors that there wasn’t anything wrong with me, or my test results came back fine. Which may seem great, but all it does is create more questions. The emptiness that comes when a friend stops calling or texting, and I know it’s because I’ve pushed them away by constantly turning them down. Watching my kids grow up and get more active, as I steadily deteriorate. The list goes on and on. But it is with the help of my kids, friends, and family that I’m able to keep The Nothing at bay.

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Even though most days I feel like I’m trying desperately to pull myself out of the Swamp of Sadness, there is always a Luck Dragon to help me out. 🙂 I hope and pray that we all find a Luck Dragon to hold on to, and that we find a little piece of magic to believe in. It is this that will keep The Nothing away.