When you are disabled, one of the first things you have to think about is what you are going to tell others about your disability, because you don’t have to tell them everything. Non-disabled people sometimes think they are entitled to a disabled person’s medical history and will ask us questions that we aren’t comfortable answering. Some disabled people are very private and won’t feel comfortable talking about health challenges they struggle with, and that is okay because you don’t always need to know. As a disabled person, I don’t mind talking about my disability with others, and it is the reason I started my blog, but I won’t tell someone I don’t know very well how I go to the bathroom because that is very personal and you don’t need to know. Most of my friends and family don’t know very much about my disability, but I do like to tell people some things about my disability just in case there was a medical emergency and I was not able to speak for myself. What do I want people to know about my disability? In this post, I am sharing a few things that I want people to know about my disability so they can better support me.
I want people to know I have Hydrocephalus and am shunted- I have a condition called Hydrocephalus, which is a neurological disorder that occurs when there is abnormal buildup of cerebrospinal fluid deep within the brain. Usually, this fluid cushions the brain, but when you have Hydrocephalus, there is too much, which puts too much pressure on the brain and is fatal if left untreated. Hydrocephalus cannot be cured, but it is treatable by getting a shunt put in your head that will drain the excess fluid away from your brain to other areas of your body. I don’t hide the fact that I have Hydrocephalus because it’s very important for people to know that. Whenever I go to the hospital for surgery or am at the airport, I always make sure people know that I have Hydrocephalus so no one puts any magnets close to my head that could throw off my shunt setting. It can also be helpful for close friends and family to know what my shunt setting is, so if I were ever in a situation where I couldn’t speak, it’s something you could tell doctors and get me faster care.
I want people to know what my access needs are- I have a physical disability, and there are some things that my disability prevents me from being able to do. Every disabled person has different access needs, and it depends on what disability you have because not all disabled people need to use a wheelchair. As a disabled person, I want people to know what my access needs are, so they don’t choose an activity I can’t participate in. I think that it is so important to tell people what your access needs are because it’s not always obvious to others, and when people know what your access needs are, they can better support you and keep you safe. Inaccessibility can be dangerous for disabled people, and one of the best ways you can protect your disabled loved ones is to know what their access needs are.
I want people to know my right hip is artificial– I have a medical condition called hip dysplasia, which is when your hip socket does not develop properly and does not cover the ball portion of your upper thigh, which often leads to partial or full dislocation of your hip. People with hip dysplasia sometimes need to wear leg braces to keep their hip in the right alignment, but it is not dangerous, and doctors don’t usually do anything about it unless it starts to give you pain. I had hip replacement surgery a few years ago because I was experiencing a lot of pain, and the only way to improve my pain was to have surgery. Hip replacements last a long time if you take care of them, but it’s not like having a real joint, and you can damage it if you do the wrong kinds of activities. I have limited mobility in my right hip because of hip replacement surgery, and I want people to know that so they don’t try to get me to do activities that are not safe for me.
I want people to know how far I can walk- I have physical disability and can’t walk as far as a non-disabled person because it requires more effort, and I get fatigued more quickly. I don’t think that it is important for people to know the specifics of my workout routine, but it can be helpful when people know how far you are able to walk before you need a break. You never know when you are going to be in a situation and have to walk a little farther than you anticipated. Recently I had an experience where I was walking on the beach and got lost because I got distracted and ended up walking about a mile more than I normally would. I was a little sorer than I normally would be, but I knew I was going to be okay because I had been consistently training for experiences like that. I want people to know how far I can walk so I am never in a situation where people push me way beyond my limits.
I want to people to know I have a latex allergy– Many people with Spina Bifida have latex allergies, and it is estimated that around seventy-five percent of people or more will develop an allergy at some point in their life. Doctors think that the reason this happens is that people with Spina Bifida have so many surgeries where they may have been exposed to latex. I have never had a latex allergy, but I am at high risk of developing one because I have had a lot of surgeries and avoid it like the plague. I don’t think that my friends need to know what medications I am allergic to, but I do want people to know I have a latex precaution so they never give me something with latex in it.
I want people to know how they can help me- When I am doing a task, sometimes I make people nervous because I look like I am going to fall, and people try to help me. I always appreciate help, but sometimes people are not being as helpful as they think and are increasing my risk of falling. If I need help with something, I always make sure that person knows what they can do to assist that is actually helpful and won’t cause anyone harm. I always tell people that grabbing onto me to help me sit in a chair is not helpful but is dangerous because I don’t have as much stability as a non-disabled person, and when you touch me, it makes it easier to fall. I need more space to do things, and the best thing you can do to help me in most situations is to get out of the way. You can’t expect non-disabled people to know how to help you, and the only way people will know is if you tell them.
Disabled people are often asked very personal questions because non-disabled people sometimes are curious or think they are entitled. You don’t have to answer uncomfortable questions from strangers because what you share is up to you. If a stranger were to ask me how I go to the bathroom, I wouldn’t tell them because it’s none of your business, and unless you help me go to the bathroom, you don’t need to know. I do like to tell people some things about my disability because it’s important to know someone’s access needs if you are trying to help them do a task. I don’t mind talking about my disability with strangers because I would rather people ask me questions than assume something that is not true. I don’t share everything, and there are some health issues I have that I haven’t talked about because I don’t know enough about them. If you are disabled, you don’t have to answer every personal question people ask you, but it can be helpful to tell your friends about serious health issues so they are more aware of them. What do you want people to know about your disability? If you liked this post, please leave a comment below and share it with your friends.
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