Disability pride is something every person with a disability deserves to have. We should all be proud of who we are. At the same time, we cannot ignore the fact that living with a disability can be hard. People with disabilities face many barriers, and some of those barriers may be health related.

I am proud that I have friends who believe they are perfect the way they are. They do not seek cures, or treatments, because they see their disability as an extension of who they are. One of the biggest divides in our community is between those who are happy as they are, and those who are desperate for a cure. For me, I believe we must find a middle ground. I think both signs have their merits, so long as neither develops a pity party or a supercrip complex. Also desperation is never good and only leads to more problems, especially when it comes to accepting oneself and their limitations, later in life.

With that in mind, let’s be real. Some disabilities are progressive. This means we lose function, over time. I think that it is hard for someone who faces no or little progression, to understand where those of us who have progressive diseases, are coming from, especially in relation to our views on medical treatments. If my disability did not progress, I don’t think I’d seek out medical interventions, either. The truth is, though, every year I lose more and more function. I could walk until I was just shy of turning 16. Today, I need help with all of my ADLS (activities of daily living). I’m not complaining. I’m able to be independent, with help from my PCAs, and I don’t care that I need that help. What I do care about is worrying every cold will turn into pneumonia. I worry about loss of lung function. I’m not worried I’m going to die, because my disease progresses slower than other types of SMA, but I also have asthma. I do worry about my lungs.

I have many friends who have progressed faster than I have or further than I have. Many of them are living amazing lives. Some of them with trachs, feeding tubes, and various other medical interventions, that keep them healthy and independent. If we could have medical interventions that allowed us to not progress further, that prevented us from getting sick, and maybe even restored some Little bits of function (i.e. more movement in limbs, less need for use of a trach), the majority of us would take this treatment. There’s nothing wrong with that.

As medical science has developed, we are seeing a greater number of children with severe disabilities, disabilities that would have killed them less than a decade ago, living into their teen years, and even into adulthood. This is unprecedented. We don’t know how long these children are going to live, because we’ve not had people live this long with their progression. What we do know is that they deserve the same opportunities as every other person out there. Still, we need to show their parents and other caregivers understanding and compassion, because this is new for them, too.

I think that people with disabilities and parents/caregivers of people with disabilities need to take a vow to work together as we explore uncharted territory. We have to educate these parents, because we live with disabilities everyday. No one can ever or will ever understand what people with disabilities go through if they have not lived with a disability. We need to teach parents/caregivers about person first language, help them understand when something seems derogatory to our community, and not just yell at them about it. We need to explain why.

While we should explain that a person’s disability has nothing to do with them, we acknowledge they deal with their own struggles as a parent of a child with a disability. Nobody wants to watch their child being treated poorly by society. This affects them, too, especially those who truly love, care, and want the best for their children. At the same time, their child’s disability is not about them, and they need to support their children, no matter what. Their child is the one living with a disability, so the best gift they can give that child is love, support, and understanding.

For those of us in the disability community, we need to be less judgmental when we see another person with a disability complaining about this or that. Truthfully, living with a disability can be hard. At the same time, I am the first to tell someone to quit having a pity party. Nothing is accomplished through whining. I have unfriended people on Facebook for lying about the severity of their disability, or talking themselves up so much their head might explode if I tried to pop that ego of theirs. I dislike people who use dishonest means to raise money or raise their status by getting people with no disability to feel sorry for them. There is a difference between having a bad day, we all have them, and telling others you think you could die at any moment, so they should give you a buck, so you can go to Disney World. That makes our entire community look like we need pity. Don’t we have enough

I believe we’ve unintentionally created this idea that having disability pride means you have to be strong and sure of yourself, all the time. That isn’t reality! Our reality is living with a disability can be very hard, but in the end, with the right support, it is worth it. We need to make sure every person with a disability understands this, and if they feel lost, alone, or scared, help them in any way we can.

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[tags]disability, severe, illness, disability pride, Independence, balance[/tags]