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October is Spina Bifida Awareness Month! I live with chronic pain and chronic migraine, but my main disability is Spina Bifida and for those of you who don’t know it’s a neural tube birth defect that occurs when the spinal cord does not develop properly while still in the womb. There are many different forms of Spina Bifida and some form have more challenges than others because the further down it is the more muscles that will be affected. People without Spina Bifida or any disability sometimes think that they don’t need to care about because it doesn’t personally affect them but anyone can become disabled and all it takes is an accident illness to become disabled so you should care about it! If you are not diagnosed with Spina Bifida at birth, you will never get it because you can’t develop Spina Bifida and it’s something that happens during pregnancy so, why should you care about? Disabled people would be the ones you go to if you became disabled and there are a lot of reasons why you should care about a disability even though it may not affect you. In this post, I am going to talk about why I think you should care about Spina Bifida awareness even if you don’t have Spina Bifida.
Spina Bifida can happen to anyone- If you are thinking about starting a family and are not adopting or fostering a child where you could choose not to raise someone with a disability you could be impacted by Spina Bifida because the exact cause is unknown, and it can happen to anyone. Planning your pregnancy and making sure you’re fueling your body properly to give your baby all the necessary nutrients lower the risk of having a child with Spina Bifida but even if you are doing taking all your prenatal and doing everything you can still have a kid with Spina Bifida because there is nothing doctors can tell you that will put your risk to a zero. There are risk factors such being Irish, overweight, genetics, or being related to someone with Spina Bifida that can put you at a slightly higher risk of having a child with birth defects that you can’t always control. If you have all of these risk factor it doesn’t necessarily mean that you will have a child with Spina Bifida or any other birth defect, but it’s still important that expecting parents are aware that it can happen to even the most responsible parents and it’s not your fault.
Education matters- We don’t designate entire months to spreading awareness about a disability because the challenges itself are worthy of praise and we do it to show disabled people that they are not alone and although not everyone fully understand the challenges, they do not go unseen. Living with a disability is hard because disabled people are forced to live in an inaccessible world and education matters for both disabled people and their families whose lives are forever changed because of Spina Bifida and healthcare providers who treat it and need to be up on the latest procedures to improve the lives of disabled people. When you get diagnosis that your kid is going it have a disability it can be scary because there is a lot of unknowns and it’s important that we adequately educate people to show new parents that everything is going to be okay and that their kid can still live well with a disability. Education matters for any and all disabilities because for disabled people to be able to thrive we need knowledgeable healthcare providers that have experience in treating our disability which is not always easy to find. It’s important that we educate new parents in the best way that we can because society teaches that someone’s disability is the problem and if parents new that the real problem was someone’s disability but ableism and lack of accessibility it wouldn’t be as scary to be disabled.
Disabled people and their families need support– Disabled people and their families need a lot of support because when you are constantly struggling it takes a toll on your mental and physical health. Disability changes families because you are forced to always think about accessibility to include your disabled loved ones, and I think my close members are more aware of ableism and the lack of accessibility than most people would be because of my disability. A good support system matters for disabled people, because people that struggle constantly are more likely to become depressed and need more support than someone without a disability which sadly not all disabled have.
Birth defects such as Spina Bifida are not always preventable, but it can be detected on an ultrasound which is around twenty week and there are fetal surgeries you can get for your kid to eliminate some challenges of Spina Bifida such as Hydrocephalus, but you can’t cure it and people are still being born with physical disabilities. Most people have healthy babies, but you should still care about disability awareness even if it never affects you because it affects some people. My life is forever changed because of Spina and although life will always be hard it’s not all bad because my disability has given me experiences that an abled person will never have! It is also Breast Cancer Awareness Month and although I do think it’s important that we spread awareness for cancer because it’s a horrible illness but it’s not the only illness that has a significant impact on your quality of life and we need to be spreading awareness for all disabilities not just some of them. If you have any more questions about why Spina Bifida Awareness is important even if it doesn’t affect you, please leave a comment below.
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