When you are disabled or are expecting a disabled child your first instinct is usually to do a bunch of google searches and find out as much as you can about that disability. Google searches are great if you want to learn more about a disability or are trying to find a doctor that specializes in a specific disability but did you know there are some things about living with a disability that Google can’t tell you? There are some things about disability that you can only learn from a real person so what shouldn’t you be wasting your time asking google? You want to learn as much you can about your disability but googling questions that you can’t possibly get the answers to will hit a dead end and make you feel disappointed.
The struggle of finding new doctors- Disabled people can’t just go to any doctor and expect to get proper treatment because not all physicians will understand the complexities of some disabilities. Doctors aren’t in practice forever and when you have been seeing a doctor for as long as you can remember and they close their practice it can be somewhat terrifying finding a new one because it doesn’t always come easy and you don’t always know where to go. I have been blessed that most of my pediatric doctors still see me through adulthood but a lot of people with Spina Bifida in my area aren’t so lucky and once they hit adulthood they have nowhere to go. Finding a physician you like is hard to come by with any disability, not just people who have Spina Bifida!
Frustrations of making/keeping friends- I have more blogging friends than real-life friends but the reality of it is I am afraid to make real-life friends because of all the bad experiences I have had. When you are disabled making friends is more difficult than if you were abled because often times people judge you before they have even gotten a chance to know you. Most disabled people(specifically physically disabled) do not have many abled friends if any at all for this reason and to be honest it’s sad! Disabled want to have friends just like an abled person does so give them a chance before you dismiss them. A lot of disabled people are very lonely because they have no one to talk to so next time you dismiss a disabled person just because they are different than you think about that.
Frustrations of finding a job- Disabled people often struggle with finding employment because more often than not employers make decisions based on what they see without knowing our ability. I have gone to so many interviews where I have had all the qualifications and the interview went well so I thought I had the job in the bag but whenever I think that I always get that email saying we are pursuing other candidates so I never like to get my hopes up until I know for sure. Since it is so difficult to convince employers that I don’t need that many accommodations, don’t go to the doctor every week and I am capable of more than you think it has been tough finding employment. It would be nice if employers would give disabled people a chance every once in a while and we wouldn’t have to take the first job that was offered us because that was all we could get.
Some activities you will miss out on- When you are physically disabled there are some activities you are not going to be able to do and might actually have to sit out of. You have to learn to accept that and be okay with watching your friends do some activities without you. Your disability may limit some things and you should let your friends have some fun without you every once in a while but you should never let your friends use your disability to their advantage by never including and if they are you need to call them out on it because if you don’t nothing will change.
Constant worries- When you have a physical disability you have daily frustrations that you have to learn to accept and live with. Did the last person that used the peanut butter remember to screw on the top all the way? Will I ever find a job that I actually want to work? Will my pain be bearable today? If my pain is unbearable and I binge Netflix all day will people judge me? These are just a handful of things I worry about on a daily basis and let me tell you there is so much more! When you are disabled you worry about so much but living with a disability is not as scary as you think it and the only way you will know the realities of living with disabilities is by talking to another person with your disability not by doing a bunch of google searches. People who have your disability will be able to tell you about their experiences and help with anything that you are struggling with.
Accessibility is a real problem- Accessibility does not end at ramps and although many places claim they are accessible they really are not and the only accessible thing about your facility is that we can get through the doorway. That is not what it means to be accessible but the reality of it is most abled do not know or interact with other disabled people so they don’t know what it means to be accessible!
Insurance companies telling you what you need- Disabled people often times have to jump through a lot of hoops to get necessary medical supplies because insurance companies are always telling us what we need and denying important medical equipment. No one knows better than what we need than the disabled person themselves and it can get frustrating to have to deal with constant insurance company battles but as a disabled person that is just something you are going to have to get used to.
When you are disabled you there are some things you just can’t prepare for or find on Google. Some things you have to ask an actually disabled person if you want to get answers because it doesn’t matter how many google searches you do there are some things Google cannot give you the answers to. Google is great for giving you recipes or any factual information but it cannot provide insight for real-life experiences! I just set up an Instagram where I will be doing life updates and posting other random things about my life that you won’t find on any other social media channels so if you want to see what I have to say follow me at https://www.instagram.com/_lifewithspinabifida/. If you have any questions about things you can’t google about disability please leave them in the comments below.