Access to Public Places – We get left out.

Second post on access for people who need mobility assistance. The first post was more about parking and grocery stores or places like Target with access for people who require aid. This post will go over places we go where accessibility isn’t really considered.

Malls: The lack of good accessibility is troublesome for me in particular because the mall by us has an elevator in the 3 department stores and one in the middle of the mall. The elevators in the department stores are usually quite a distance from the main entrance. When I went to the mall a while back with my family they took the escalator while I searched out an elevator because I know that being with me trying to find access is a pain in the ass. Service dogs, walkers, scooters and wheelchairs cannot go up escalators or stairs (well service dogs can take stairs, but I can’t and usually I regret it if I try because I fall a lot). For me, extended periods of walking make my internal temp increase significantly and then I start to lose all feeling in my legs like they’re Jell-O. No matter where I ended up in the mall I had to walk out of my way to find an elevator.

Restaurants: Think about a place you may frequent, do they have wide isles or are the tables very close together with narrow walkways? Most of the places I go for date night have narrow walkways to accommodate more tables which makes walking in with Oak a challenge. For the most part they also have tables where the legs are not easily used for wheelchairs and service dogs. Oak has to go under the table when we eat but if the legs are too close together or have wide bases it’s hard for him to go under so he ends up closer to the isles where people walk. When were went to Ouray in June we ate a restaurant where the seating was on the roof, with no elevator, only stairs. I did it, but my body did not appreciate it one bit.

Amusement parks: I have only been to the one in Denver since being diagnosed and I know from research the bigger places like Universal and Disneyland have more things for people with mobility issues. Over all access is not a problem around the park, it becomes an issue with the rides though. Roller coasters and anything that spins are an issue for me due to my extreme vertigo from my meniere’s disease. You cannot take a service dog on rides so you have someone your with to hold them while it’s your turn so you cannot be on a ride with everyone at the same time, ever. I used a walker when we went because it was so hot that I was pretty sure Oak would be miserable trying to walk on the very hot cement. Heat poses an issue for my MS too, so I have to go with a cooling vest, cooling cloth and a portable fan. There isn’t much in the way of shady spots though so after a couple of hours when those cooling things are no longer cool and you cant have a cooler with you its just a matter of time before the heat takes a serious tole.

For those who are in wheelchairs, if they can transfer themselves or walk short distances it would probably work, but wouldn’t it be amazing if they made a cart on the roller coasters that wheelchairs can lock into? Can you imagine how much better that person would feel not having to depend on someone every time they want to go on a ride?

As a person with mobility issues I can tell you that access sucks. It’s not inclusive for most places, it’s depressing when you feel left out because of something you cannot control. No one chooses to require mobility aids, and we all want to do the same things we could do before or do the things that our friends and family can do.

I challenge you to look at the places you go with a new view of the way it’s laid out. Imagine you are in a wheelchair, would you be able to maneuver around easily or would it take other people to help you?

 

 

Wheelchairs, walkers and canes oh my…

Scooters and service dogs too to be fair. Personally I’ve used canes and walkers and obviously my service dog Oak. Let’s talk accessibility!

Ideally every building, parking lot and public space should be decked out for us mobility challenged people. That unfortunately is not the case, some places try but for the most part only the bare minimum of the law is achieved.

My previous office building, where I worked for 10 years before my MS and other health issues decided my body and brain just couldn’t do it anymore, had quite a few disability parking spots. That was great, the down side to that is that you have to get there early because those spots are shared with three buildings. The building also had buttons that open the doors for you in case you can’t. Most cases this is if you’re in a wheelchair or walker or scooter, but opening heavy doors with or without a service dog is challenging for me due to muscle atrophy and a tore biceps tendon. Going into the building the buttons worked, going out of the building it did not. I advised the maintenance workers of the problem and it worked for a week before it stopped working again.

I don’t believe that people who work in buildings or maintain them think about those of us who are forced to use other methods of transportation for our bodies.

When I go to the store I can walk with my service dog and that is great, he keeps me from falling down. As a short person I see the issues that people in wheelchairs or scooters face. What happens if the thing needed is on the top two shelves? When it happens to me I have to wait for a tall person to walk by and beg the for help. Now, imagine that you cannot reach above chest or abdomen level every time you have to go shopping.

Both schools my children attend only have FOUR disability spots for parking. I can guarantee there are more than 4 people who need those spots because when my son was in kindergarten and most of first grade I had to arrive an hour early in order to have a parking spot so I could go fetch him from line. When there is a back to school night or even at either school I have to arrive more than 30 minutes before a normal person would to ensure that I can have a spot.

The current law in the USA for ADA parking is based on how many parking spaces you have in the lot. The other law for accessibility depends on the setup of buildings, an outdoor mall requires a certain amount of spaces based on access to different outdoor buildings. An indoor mall only has to have handicap spots next to an entrance. Now, if you enter an indoor mall for example there are escalators and regular stairs but elevators are less frequent. People in wheelchairs, scooters, walkers or service dogs cannot take anything but an elevator.

Next time I will talk about some places that people don’t often think about access unless they require it or are with someone who does.

 

Am I Strong Enough?

I have been told by many people that I am strong. Strong in how I keep moving forward in spite of all the bullshit that is thrown at me. Strong because in the face of everything I try to have a sense of humor. Strong because most people couldn’t handle all the shit that I deal with daily.

You know what the secret is? I am not, I am not strong, I do not want to keep having to deal with everything that keeps coming at me. If I could chose, I would say “No THANK YOU!” or “Fuck Off!” but no one is listening. No one is giving me the choice to not be strong.

I get that most people don’t think they could handle it, but you don’t know until it is the only option you have. I think of this frequently when I say something stupid to a mom with twins like “good for you, I couldn’t do that”. They didn’t have a choice either, they have to figure out how to handle multiples.

This last week I am fairly certain I tore my right biceps tendon, but I can’t get into the doctor for 2 weeks. You might think that is a weird thing to be certain about, except I tore my left biceps tendon last year so I know exactly what that dull, throbbing pain feels like. The constant weighted feeling in my shoulder if I use my arm.

Yesterday we took our boys to the mall, my body’s internal temperature regulator does not work, thanks MS. I am walking around the mall with my husband, son and service dog trying to have a good time for the kids. Meanwhile my face is turning red, my husband tells me my face is beading with sweat like I was working out , I start to lose all feeling in my legs (causing a weird limp) and all of my pain was intensified and my brain felt like it was melting. None of this was by choice. I am not a toddler, if I throw myself on the floor and have a tantrum or start crying not only would that embarrass my entire family but someone may call 911.

There have been times when people tell me “God only gives you what you can handle” and to that I say “Bullshit” and this is why I am not strongly religious. What kind of asshole gives a person MS, Meneire’s Disease, PCOS, torn hip cartilage, torn tendons, anxiety, alopecia an all the small things wrong with me and all the worse symptoms of the main issues too.

I am three months late getting my infusion for my MS, first the hospital messed up twice and then we had to wait for insurance. I finally got it approved and today my insurance approval letter says the medication that is given twice in two weeks at 300 mg doses was approved for one time of ONE mg. I am done! I am tired of fighting but I have two children and a husband that need me so I don’t have another choice I have to keep trying to move forward. It’s like climbing a escalator going the opposite direction, it’s hard and exhausting but the only other options aren’t great.

So, sorry for the long ranting of this post, but the message to take from this is you don’t actually have to be strong to look strong to people who don’t know. Mental health is important and this is why I talk to a therapist every two weeks, more frequently if needed. It’s a place where I get to not be strong to the outside world, I feel safe being vulnerable and I don’t have to worry about anyone else during those hours. I don’t have to worry about making my children or husband worried for me. You don’t have to be weak alone, you can find someone to talk to that can help you work through all the unfairness that comes your way. Work through anger, fear, sadness and resentment, oh how my therapist would be proud of me with acknowledging feelings other than anger.

It’s hard, life can be difficult and frustrating. There may be days you cry in the shower so no one knows it’s happening (shhh not me, ok don’t judge me). I do my best to try and give my boys good memories of their childhood, I work through the pain on the days I can and watch movies with them on the days I can’t.