Actions You Can Do Daily to Help People Living with a Disability

There are certain actions people do every single day that whether they realize it or not make it more difficult for those of us living with a disability. There are laws in place to address some of them but there are also some other examples that aren’t written rules but that everyone should attempt to abide by. Often it is adults that break these, and it is in front of children. This in turn teaches them that it is ok to do these things.

Here are some examples of things that if you don’t have a disability or should keep in mind.

Do not ever park in a handicap parking stall unless you have a sticker/disabled license plate. There are no excuses for this. It is so frustrating when someone is parked there because it’s convenient for them, they just need to run inside quick to get something or they just don’t feel the laws apply to them. Unfortunately, I see this happen, especially at my children’s schools, every single week. I personally can’t walk on crutches on the snow and ice, so I can’t walk my child up to school. I need to park as close as I can to the buildings to make sure that I can get inside as safely as possible. I try to educate people and ask them not to park there. I have talked to the school about it and they have sent out reminders, yet people still do it.  I am going to be writing a letter to the editor of our local paper to try to educate more people but have also talked to our local law enforcement and told them about how often I see it and that I have started to take pictures of people’s license plates that are parked in stalls without a sticker or plate. They told me I can call them, and they will address it with the person whether it’s a warning, asking them to move or ticketing them if needed. I would rather not get people in trouble but to get them to change their behavior. I hope that by raising awareness it will help.

Even if you have a sticker and you are having a good day it doesn’t mean that you have to use it. I have had a sticker since I was 15 years old and, on the days, when I felt good I wouldn’t even use the handicapped parking unless I had to in case there was someone worse off than I was. Remember though that just because someone may not look disabled to you it doesn’t mean that they aren’t. They may have pain that you can’t see, or they may be able to walk into the store quickly but half way through they run out of energy and need their car parked close. As long as they have a sticker or disabled plate they have the right to park there.

If you are in the bathroom and there are other stalls open leave the handicapped stall open and available. I often see people use it and hear kids admit that they use it because it’s a bigger bathroom. While this is true it is for those that need assistance or to fit a wheelchair/ scooter into the bathroom. If there are no other stalls left and there isn’t a person that needs assistance use it but try to be quick.

I have also been to schools that don’t have doors on their handicap bathroom stall. I can see how this may be easier for those working with the students to get in and out of the bathroom, however it is a public place, so privacy is a huge concern. Would you want to use a bathroom without a door on it?

If you see someone who looks like they may need assistance don’t be afraid to ask. The worst thing that can happen is that they will say no. I have been told that people are afraid they will offend me if they ask me for help. I hate having to constantly ask for help so it’s a welcome relief when someone sees me struggling and offers to help.

If you see something in your environment that you feel would be helpful for people living with disabilities don’t be afraid to speak up and advocate. The more voices are heard the more changes will be made.

If you oversee designing, building or setting up a store or devices consult with or better yet have someone with a disability on your staff to evaluate whether it is helpful. Also have someone with a disability go through your business to see whether it is disability friendly. If you don’t have a disability you won’t be able to look at it through the same lens as someone who does.

Remember that kids are always watching and learn from your behavior. Be a good role model and show them how to help make others lives easier whether you are around or not.

Think Before Speaking With People Living With a Disability

When you have the pleasure of meeting or seeing someone living with a disability there are certain things that you should and shouldn’t do. Sometimes people don’t know what to do or what to say so I urge you to think about it before you choose what to say.

I have had a disability since I was 15 years old so I have heard my fair share of comments and awkward questions.  I don’t fit the “look” of being disabled so people often stare until they can figure out what the disability is. When I had my foot it was less obvious so I had people come up to me when I was in my wheelchair and ask me what happened very soon after my accident. It was painful to talk about at that time. I usually kept a sock on my foot because I didn’t want people to see it because of how disfigured it was. If I got paid a $1 for every time someone asked what happened I would be rich. Usually people asked if I had sprained my ankle because my foot looked swollen from the muscle flap they put on it to repair it. I think the strangest question was when a man asked me if I got bit by a horse while we were on vacation and I was laying out at the pool.

When it wasn’t as noticeable because of my pants and I was able to walk without assistive devices people’s words and actions got worse because it was harder for people to see my disability and had people call mall security on me for parking in a handicap spot, the police question me for parking in a handicap spot, even though I had all the paperwork and handicap sticker but he continued to question me and because their data base was down he decided to “let me off the hook”. People would say things like “yeah you are pretty handicapped” or call me “lazy”. I only used the sticker on the days that I needed it and if I was having a good day I wouldn’t use it in case someone else was worse off than I was.

I had my leg amputated when I was 34 so I thought the comments would stop but they haven’t. When I was able to wear a leg I got more comments because you couldn’t always see what was under my pant leg. Even without a leg though people will say things that just shock me. It’s like asking someone when they are due after they have already had their baby. Once you say it you can never take it back.

These are some of the most awkward questions and responses I have had since becoming an amputee. They are often followed by awkwardness and/or silence.

“How long are you going to be like that?”

Me:” Uh, forever”

“What did you do twist your ankle?”

Me: No I had my leg amputated.

“I was on crutches once. I totally feel your pain.”

Me: Silence (Thinking: No one’s story is the same)

My 8-year-old daughter: “Are you kidding me??? How in the world does she think she can feel your pain? You had your leg amputated.” (I still hear about this one randomly because it made her so mad)

“I hope I am not lazy and use a scooter someday” (This was when I could wear my leg)

Me: Take my leg off, flip it upside down, put it in the scooter and pull up next to him and smile as the man’s mouth was hanging wide open.

As I am on crutches in the bathroom at a restaurant and the floor is all wet so I am trying to get my crutches onto two dry squares and not fall down an employee says  “Oh my gosh what happened.”

Me: I start to tell the story and stop because I am concentrating so hard to not fall so instead asked “Can you please wipe up the water on the floor so I don’t fall?” This was a time I needed help not to tell my story.

I LOVE kids! They are so innocent and curious and will come right up and ask “What happened?” I tell them and they say things like “I’m sorry” or even “That’s really cool” and go on their way. Sometimes they just stare but usually if I stare back they will catch my gaze and just smile back.

Some adults try to sneak a peek and act like I can’t see them. I’m not blind just physically disabled. People ask me if it bothers me that I get stared at all the time.  Some days it does and other days it doesn’t because I don’t have time to look around to see how many people are staring because I am driving my scooter or trying to not fall down on crutches. It bothers my family more because they are the ones that are watching me and the people around me. I do think that it would be interesting to wear a hidden camera to see just how many people do watch me in a day.

If you have questions ask but make sure it is in the right moment and that you think about your question before you ask it.  Some people will just smile or will ask if I mind if they ask what happened. I would much rather answer questions than deal with attempts at being funny or the small talk back firing into awkwardness. Realize though that some people don’t want to talk about it because it was a very traumatic time for them.

Remember that once you say something you can apologize but you can’t ever erase it. Just because someone doesn’t fit your idea of disabled doesn’t mean that they aren’t. You can’t always see the pain going on inside their body. If you don’t want to feel stupid and stick your foot in your mouth don’t judge or assume you know what you see in front of you.

Finally don’t feel like you need to apologize for your child asking questions, unless they are inappropriate questions or the person gets upset about the question. Most of my friends that live with a disability would rather answer questions but there are some people who may not want questions asked. I suggest having a conversation with your child about when it is a good time to ask and when it isn’t. I personally always thank them for asking.

 

Changes Businesses Need to Make

If you don’t live with a disability or are close to someone that does live with a disability you may never realize how difficult it is to get around in this world. Many people take for granted being able to go where ever they want to. Living with a disability there is a lot of thought and planning that goes into every trip that involves leaving the house. Usually there is no such thing as stopping at the store to quick pick up something, going to get gas, shopping or even to a medical appointment.

Just because businesses say they are accessible doesn’t mean that they really are. Until you are the one using the wheelchair or a scooter, that a business may or may not have for their customers, or other assistive devices you will not get the full experience of whether or not it’s accessible. I have been at gas stations that have a button to push if you need assistance. That isn’t helpful when you aren’t able to get out of the car. I have been stuck in multiple bathrooms because the doors are too heavy or difficult to get out of yet have a handicapped sign outside the door. I don’t know who gets to decide that it deserves the handicapped accessible symbol but I do know that more people living with disabilities need to be a part of the process.

Earlier this year I created a checklist for businesses based on my own personal experience and from the feedback provided by other people in disability, chronic pain and amputee social media groups. I previously shared how a Target manager followed me around their store to see what it was like to look at the store through the lens of living with a disability. I filled out the checklist and made notes as we went through the store and met with him afterwards to talk more about it. I was so excited to have a store like Target be willing to look at the suggestions. He said they were doing a remodel in the future and would send it up the chain to see if some of the suggestions could get implemented into the remodel.

After we met I sent him the checklist of suggestions of changes, that in some cases were desperately needed. I also wrote a letter to go along with the checklist about why these changes are so important and why businesses need to be the ones to make the changes. Making changes in the government is a very long process and often doesn’t make specific enough rules for businesses to follow.

Here is a portion of that letter: I believe that together we can all fight to make a change. As a person with a disability I want to be able to come into your business. Businesses should step up and make changes so those of us with disabilities can come into your businesses. According to the Census Bureau and the American Community Survey, in 2010 there were 56.7 million people (nearly 1 in 5) had a disability in the United States. By the year 2030 it is predicted that 71.5 million baby boomers will be over the age of 65 which will make this number grow even larger. This will make it even more essential to make changes so businesses can let all customers in their establishments regardless of their disabilities. The American’s with Disabilities Act (ADA) was updated in 2010 with compliance dates ending in March 15, 2012 according to www.ada.gov/regs2010. These updates aren’t nearly enough. There is a worldwide 2030 Agenda that has sustainable development goals to Leave No One Behind. While I am so relieved that this is on people’s radar, 2030 is a long time away and people like, myself want to see changes happen sooner than that. We are the ones living with these challenges every day.

Suggested Changes

  • Put the phone number on the handicap sign if someone needs help getting inside
  • Cart corrals close to handicap parking
  • Automatic door openers to get into the building
  • All automatic door openers should be set to open slowly and long enough for a person to get through them
  • A secure place to hold crutches, walkers, canes, etc
  • Having a scooter/multiple scooters available and charged by the entrance
  • Put the store phone number on the scooter
  • Have cup holders on scooters and carts
  • If there is only a wheelchair available, or no device is available have a team member offer to help shop
  • Wheelchairs with carts shouldn’t swing up or you can’t stand to reach items
  • Rugs can be a tripping hazard so should be flat
  • Rugs/carpet is needed so people with crutches/canes don’t fall on wet floors including the bathroom
  • Having a bathroom in the front and back of large stores
  • Automatic door openers for all bathroom doors
  • All doors should have lever openings and not knobs
  • The opening to get into the bathroom needs to be wide enough for the store scooter to get through
  • Bathroom stall doors need to be wider
  • Install two hooks in the handicapped bathroom stall for service dogs
  • Have a family style restroom for those that need to have a family member or worker in the bathroom to help them
  • Toilets should be handicap accessible (higher)
  • Strong support bars in the bathroom stalls
  • Lower paper towel holders, soap dispensers, light switches and hooks for people with disabilities and children
  • Lower sinks available for people with disabilities and a stool for people that can’t reach
  • Increase weight capacity on the changing tables for children with disabilities
  • Install the paper towel holder next to the sink along with the garbage to reduce water on the floor in the bathroom
  • Doors should be set to open easily and not too heavy if there is not an automatic door opener
  • Wider aisles to allow space to turn at the end
  • Remove displays in the aisle so wheelchairs/ scooters can get through
  • Racks should be far enough apart to get through with a wheelchair/ scooter without running into them
  • Putting a bench or chair to rest in places throughout the store
  • Check on customers to see if they need help
  • Put duplicate items on the top shelves
  • Put heavy items on bottom shelves
  • Make columns a different color than the floor to make it easier for people with low vision
  • Put the store phone number throughout the store in case someone needs help C
  • Chairs in the dressing rooms
  • Lower checkouts and ATM card readers
  • Offering help out to anyone in a wheelchair/ scooter or that has an assistive device
  • Offer free delivery service, free shipping or eliminate price increases for pick up to people living with a disability
  • Outside: even pavement, no cracks or small steps
  • More handicapped parking stalls
  • If there is a ramp have a railing
  • Truncated domes
  • Raised bumps that signal ramps and curbs are good for those with visual impairment but not good for those with certain scooters or walkers
  • Ramps painted a different color than the sidewalk, including the wings
  • Snow and ice removal from entrances into the building
  • Handicapped entrances in the front
  • Offer curbside assistance
  • Putting the phone number on the gas pump in addition to a working button for assistance with pumping gas
  • Handicapped seating at places like movie theaters should offer seating closer together for those that can transfer from their chairs to a seat
  • Lower peep holes in hotel rooms

    This meeting took place months ago and although I have heard nothing in return. I hope that they are still considering them and just haven’t had time to get back to me. I still go there because the workers there are helpful and do what they can to make it easier to shop there. We need the people up the chain to make the changes. We need more people with disabilities involved in decision making processes.

    I understand that change involves money but not allowing people to come into your business will cost you more money and word of mouth goes a long way. After reading the story my local dentist office wanted to go through the checklist process with me. They don’t go have the money like some large corporations do but at my next appointment my dentist surprised me with the new handicapped sign he had made with their phone number on the bottom of the sign. I cried tears of joy and finally feeling validated by a business that recognized changes can be made. It likely cost them more money, but they didn’t care because they wanted to help their customers. This is another case where word of mouth travels fast. Later that day my chiropractor wanted to talk to the dentist to get the same sign made for his business.

    Just because we are disabled doesn’t mean that we are worth any less than any other customer. Maybe we need to have a national day for those of us living with a disability and chronic pain and show up at these businesses but only stay outside to show just how many people it truly does affect and how much business they are missing out on because they won’t make the changes, so we can all come inside. I hope that more people are willing to stand up and advocate for change to be made. If small businesses can make changes imagine what large businesses can do.
    Having the knowledge to make change and doing nothing with it is worse than not knowing anything about it.

    People living with disabilities face uncertainty with the government and spending cuts. It forces people to have to watch what they spend more than they already do. I also hear on the news all the time how brick and mortar businesses are losing money because of online shopping companies. I love when I can go shopping at the actual store but so many places make it so difficult that it’s often easier to stay home. At least I know if I shop online I don’t have to worry about getting stuck in the bathroom, falling down or running into racks.

    Please share this with others so together we can make a difference and if you find a business that is willing to make a change promote them with #WillYouLetUsIn.

Making Changes

I recently made the difficult decision to not return to work. I put a lot of years into school and work to be able to have a job I love, working with kids and families. I hope to be able to return to work at some point. I’ve taken the past couple months off to try to see if I could find a leg I could wear and get stronger. What I learned was that my body is not able to do that. My brain still thought I could do everything. When I was working I would push through the pain every day which caused me to have to take so many pain medications. I would also use up few good hours of energy so I had nothing positive left to give my family. I would sometimes dread the nights the kids had sports because I hurt so much that I couldn’t imagine how I would make it through the entire night. I  have learned to listen to more to my body and plan for more resting time which has allowed me to take a lot less pain medications and actually get to enjoy my family and their activities.

Before my amputation I didn’t have pain every single day for years at a time. Now every morning I wake up it is instantly there or why I woke up. Some days are better than others but I still have pain throughout the day and night. I have spasms in the end of my leg that bring me to tears that, come out of no where and doesn’t stop until it feels like it.  I’ve realized that I don’t have a lot of control about my pain. My providers also don’t have a lot of options for me other than medications, supplements, trying another new liner and leg, coping skills and of course prayer. Even though I had times that were difficult with my foot it was only for a couples weeks at a time or I couldn’t do everything I wanted to do.For many years I was still able to play volleyball, go bowling, carry my kids, clean my house, go shopping and usually work as many hours as I wanted to. I have now had to completely change my life. Before I had to rest sometimes but now I need to rest everyday.  I have to get up to get something or go somewhere I am constantly thinking about how I will get there. I haven’t walked unassisted in over a year and haven’t been able to wear a leg for more than a couple hours in 7 months. I have had to modify how I live and depend on others a lot.

This whole experience has opened my eyes up to injustices and barriers that I never had to look at when I had my foot. What I have learned to rely on is my faith, family, friends and my voice. I know that God has shown me that I need this break and that I have faith in Him that he will continue to lead me down the path He wants for me. It has brought me to a path of advocating for others, educating and sharing my story. I hope by doing this it will help show others living with disabilities that we need to all work together to make changes.

Businesses need to step up and make more changes because every year there are going to be more and more people living with a disability. If they don’t start making changes now they are going to be losing out on a ton of revenue from those of us living with a disability. Collaborating with others, sharing information and stories can be so powerful. It is amazing the changes that can be made when you can make the step to put your story out there.

I hope it helps change people’s perception and treatment of people living with disabilities. There are people in the world that are quick to make judgements and comments  to people with a disability if they don’t fit what their perception of what being disabled looks like. I have dealt with this since I had my foot injury. Even now I get dirty looks when I pull into the handicapped stall and want to tell them to just hold on because when I get out and you see that I am missing half my leg then you won’t have to look at me like that anymore and may even feel bad for how you were looking at me. People living with disabilities get stared at a lot. Some days it’s easier to deal with than others. It is hard on my daughter especially to watch all of the people that stare at me throughout the day. I’m usually trying to make sure I don’t fall down or run into anyone so I don’t always notice it as much. Kids are typically good about it. They look very curiously or in shock and will often times come up and ask what happened. I tell them a short version and they say something like, “Oh, I’m sorry” or “OK” and move on. I always thank them for asking. Some adults will act this way but more often than not they will try to quick sneak a peek, which is actually more obvious and I actually notice that more. When I was able to wear my leg and had pants on it was more difficult to see why I was disabled so I would get asked often if I sprained my ankle or hurt my knee. Just as a recommendation if you choose to ask someone else or comment why they are on crutches, limping or even in a wheelchair be prepared for the answer. It can turn super awkward super quick if you say the wrong thing.

Just because you see someone with chronic pain smiling doesn’t mean they aren’t in pain. It could be that they are having a “good” day or that they are really good at masking it and don’t want others to constantly worry about them. Just because people take pain medications doesn’t mean that they are drug addicts or that they are part of the opioid epidemic. Most people with chronic pain wish they didn’t have to  take any medications at all but if they do many are on a pain contract. They have to have their medications counted at every appointment and can’t take any more medication that they are prescribed and their counts be off or they run the risk of not being able to get their medications anymore.

People living with chronic pain and disabilities want to be able to do all of the “life responsibilities” like go to work, play with their kids and not have to ask for help with things. It makes it hard sometimes to not be envious of people that can use their bodies whenever they want to and can choose whether they want to play with their kids, go to work, shopping, or even to the bathroom.That is why it was a difficult decision to not go back to work for me. I know though that if I rest during the day then I can do more with my family and for my family without having to take so much medication. It’s mentally and physically exhausting living like this so even though it was hard and scary I had to trust that it is the right thing to do.

I have also realized that life is too short to not live it. This has forced me to make changes our priorities in our home life. Since my amputation we would often say things like “When mom feels better we will… or maybe next year mom will feel better and we can do…” Now we honestly don’t know if mom will ever feel better so we have to figure out how can we navigate life with mom not feeling good. It means having a scooter at home and one that can go in the car, having to check with places to see if they are handicapped accessible, figuring out how and where to rest, driving less, having more pillows in the vehicles and making sure that if my body is hurting that I rest and not just push through it. People may judge but we finally got to go to another state to watch the Brewers play. It was a lot of extra work making sure that everything was in place, I had to take naps when I wanted to be out exploring or laying down when I wanted to be up but we had so much fun. It felt so good to be at a baseball game again because we hadn’t been to one since my amputation and we used to go to a couple a year. We got to visit with family and a friend and for a long weekend forget about the stresses that we usually have to deal with.

Now that I know I need to rest everyday and being that I have had to be in a scooter or on crutches for so long, I have also learned that I will not be able to accomplish what everyone else can do. Instead I do the best I can, choose to not give up and I continue to have hope that I will walk again someday. It may not be here on this earth but someday I will walk again and be pain free.

I have changed my faith and become closer with God than ever before. I thank God everyday for the blessings he has given me like my husband, children, family, friends, a house to live in, cars to drive and food to eat. On top of that I always thank Him for helping me connect with my fellow pain/disability warriors that He has put in my life so we can share our stories and struggles and we can relate to what we deal with. I thank Him that it’s me going through this and not my children and that I am so blessed to not be fighting for my life. I pray for strength and comfort to get through the pain each day, for patience with others and the wisdom to follow what His plan is for me while I am here. I also pray for others that are struggling that they find comfort and support from Him and that they are not alone.

My family has also had to make a lot of changes in their lives. Jason already has the burden of providing and now it rests solely on his shoulders. He and the kids do so much for me every day and some days have to do way more than most husbands and kids their age have to do. I hope they know how much I truly appreciate even the smallest things and that I love them more than they will ever know.

Thank you to all of you that continue to send prayers, encouraging messages, call to check on me and still ask me to do things, even if I end up having to say no or modify the plans in someway.  I hope it inspires others to make changes and continue to reach out to their friends and family members living with a disability. Finally, thank you to all of the new people I have met along this journey and I look forward to seeing what kind of changes we can make together in this world.

 

 

 

 

 

 

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#WillYouLetUsIn

Being 15 years old and having a disability forced me to look at the world through a different lens. Throughout the 19 years I lived with my foot there were times that I needed to use my handicap sticker and sometimes use store scooters. I would only use it if I needed it because there were times that I was fine to walk further, dance, play volleyball and go bowling.

After my amputation I have had to change so many ways of doing things, including a new disability lens. Now I live with a scooter in my home and my car, in case we have somewhere to go that doesn’t have one. I have a shower chair and can no longer stand to take a shower. God must have known I would at some point need these things and blessed us with the house that we have. My father in law built me a ramp so I can go and and out of my house. All of these things were supposed to be temporary but they are now an every day part of my life.

For the last four years, if I wanted to go to to a store I could only go to stores that had their own electric scooters or a store that didn’t involve having to walk very far.  These mainly consisted of big box stores and grocery stores and that was only if there was one available. If there isn’t one available I would have to leave, stand on my crutches, or just sit and wait until one was available. I LOVE to go shopping, even if it’s just to look, so this has definitely made a difference in where I can go. It also explains why I can be in Target for hours at a time, if there is a cart available.

Over the last four months I haven’t been able to walk on my own. This caused me to have to change my life even further. Everything from going to work, pumping gas, picking up my kids from school and of course shopping. My disability lens also changed. I noticed one morning at our local Kwik Trip that they had a handicap sign on their gas pumps along with their phone number. It took my pride a few times but I finally called the number and it was so amazing to have someone come out and pump my gas and even get a pop for me. It sounds like a small thing but to not have to climb over the back seat to come out the back passenger side and then figure out how to get inside on crutches to carry a pop is a HUGE thing. It’s something most people take for granted. Then I started to look at other gas stations to see if they had something like it and so far I haven’t found one.

I started thinking about how nice it would be to just have an app that would tell you where the most handicap accessible places are and there really wasn’t much out there. There was one company that made films and did create a website to be able to allow others to rate the accessibility but it hasn’t done much in the past couple years. I  tried to email the company to see why it didn’t work and even started doing my own research into how to get something like that going. I am a child therapist though and not a computer or app programmer.

After praying about it and asking God how he wanted me to help, I was led down a different path. After several months I was able to finally leave my house and go to a store. I was so excited to be there but I ended up getting really frustrated because I couldn’t get around where I needed to go and felt embarrassed. One of the team leaders saw me and talked to me about how frustrating that must be. It was so nice to have someone that worked there just acknowledge that fact. She encouraged me to write a letter to their store and let them know the struggles I have when I go there. Life got busy so I never wrote the store. I did return though about a month later. It was during the day so there wasn’t very many people there. I was excited to be there and get to take my time and look around because I had no kids with me. I started out in the women’s section and within 20 minutes I counted 25 times that I had run into the racks in the store’s cart. It was slow enough that there were plenty of people to come and ask if I needed any help with anything. One group I could tell were some sort of managers of the store. I joked with them how I had continued to run into things so unless they could change their store they probably couldn’t help me. I also told them about my experience at Kwik Trip and how amazing it felt to have a business make a change to make it possible for a person like me living with a disability. I continued to joke that I had several suggestions for their store but also informed them of how many people are unable to come to store’s because they are too many barriers to be able to come inside. One of the managers  asked if he could follow me around the store the next time I came and if I had any suggestions that he would love to hear them.

This inspired me even more. I started doing more research and according to the US Census Bureau that there are 51 million people living with a disability as of 2010. That is nearly 1 in 5 people!! I had a list going of things that I thought would be helpful to have changed in businesses but I am only one person. That was when I was led to find out from other people what they thought would be helpful. I posted a question to every Facebook group I am a part of with other people living with a disability, which was over 200,000 members. I asked, “What would make it easier to go inside a business for those living with, have a family member or working with a person living with a disability?” The response was astounding. I  heard from people that are fellow amputees, people that live with or care for people that primarily use a wheel chair, people with chronic pain, people with low vision, people with service animals and people living with disabilities that are more difficult to see on the outside. Through the research I looked up and all of the responses I received I made a checklist for businesses, of things that could be changed to make it possible to let all of their customers into their stores. I didn’t tell anyone what business wanted to meet with me because I didn’t want anyone’s answers to be biased.

A few weeks later I let the manager, Anthony, know that I would be returning to the store to get a few things and he asked if he could follow me around. I came prepared with my checklist and all my research to let him know just how many people are living with a disability and how many people could potentially be living with a disability by the year 2030. He followed me around and saw all of the barriers that I faced in the store that he never would have seen if he tried going through the store in the scooter. I also learned things about the store that I never knew were available. He also told me that they were planning to do a remodel at their store and that it hopefully isn’t too late to try to get some of these changes into their plans. I left feeling so blessed to be given the opportunity to show him what it looks like to look at the same store through a different lens.

I took the notes and information I got and put together a cover letter and a checklist with all of the suggestions that could be made and emailed it to him. This experience was amazing because it brought me to other people living with disabilities, other people advocating for those living with disabilities and a business that is willing to look at their business through a different lens. This wasn’t just a small local business. This business was Target, in Janesville, Wisconsin. Now the checklist and suggestions are in their hands and I can’t wait to see what changes can be made. As if I needed one more reason to LOVE Target!!!!!!!

About a week later I was tagged in a post on Facebook that there was a 12 year old boy on The Ellen Show that is in the process of making an app called The Ability App. I LOVE the Ellen Show already because of all the amazing things she and her staff do for others. I also LOVE that there is a 12 year old boy that is developing this app, not because he has a disability, but because he saw a man in a wheelchair trying to get into a business and how difficult it was for this man. The app is going to rate different businesses on how handicap accessible businesses are so that those of us living with a disability know whether or not we can come into their business. I was so excited that I sent him a message on Facebook to thank him and to share with him and his family the experience that I just had and the checklist that thousands of us had input on making. We still haven’t talked except through messaging.

This experience has also made me start reaching out to other disability advocates so we can all team up together so businesses step up and make changes so we can safely come inside. Obviously some changes require money to make the changes but some of them are small things that don’t cost a lot, if anything at all. Target was the first business willing to look through the lens. It has opened up the dialog though with even small businesses I go to like the dentist office and the chiropractor to show them how they could make changes to make their businesses safer and more accessible for everyone to come in.I can’t thank these businesses enough for this and thank God for leading me down this path.

There are many scared American’s right now with all of the changes going on with the government and healthcare. My hope is that together we can all team up to make changes together. I been inspired spiritually, through working with others and reading what others have written and watched what others have done. I hope that together we can inspire others to make changes so we can live in a world that gives us the ability to get around a little easier.

Let’s promote these businesses that are willing to make the changes to let all of their customers inside. Use the #WillYouLetUsIn

Anyone that wants to use the checklist with a business in your community send me an email or I will be posting the checklist soon.

 

 

 

Asking For Help

Asking for help is probably one of the hardest things to do for people yet it’s one of the first things that we offer to others. Even if people do offer it we still don’t take them up on it. I don’t know why it’s so difficult. It’s like we have this pride that if we ask for help we are less of a person or that we have somehow failed. I know that I am definitely guilty of this. I don’t like to bother others or feel like I am a burden. I have had so many surgeries and health issues that there comes a point where I feel like I have used up all my favors. I try to plan out my helpers so they don’t get burned out. Luckily we have family and some friends that still offer to help and who don’t even wait to be asked. 

I was talking to a good friend of mine the other day and we talked about needing help. She recently had an injury and wasn’t  able to use her arm. She said that she never needed help like this before and now that she has if she knows someone that needs help she isn’t going to wait to see if they need help she is just going over to help. I think that if you have never needed help that you never will know how appreciated it is. It’s usually those that have needed help that will be the ones to help without offering or being asked. People often think of the things to help with like meals and rides which are so helpful. They are also the easiest to ask for. Other things that people have done for me that I have appreciated immensely that aren’t so easy to ask for are picking up the house, doing laundry, coming by to visit, calling to check on me or even sending messages. 

Being in this situation and unable to do my usual routine can become very frustrating and lonely. I sit at home all day with no one around to talk to. People work during the day and are busy at night. I also think that people don’t realize how lonely it is and think that they don’t want to bother me or that I have plenty of visitors. In my case there are never too many visitors or phone calls. I know that I also feel bad and guilty for all that Jason and even my kids have had to take on during these last four years. It’s nothing I will ever be able to repay to them and I know that they don’t look at it like that but it doesn’t stop me from feeling that way.

 I never imagined that life would turn out this way. I can only hope and pray that one day it will get better and that I can hopefully help others out as much as they have helped me. You would think that I would be used to it after dealing with it so many times but I don’t. I’m grateful for all that I have though and I know that God has a reason for all of it so that keeps me going. Thank you to all of the people that have helped me and my family throughout the years. It means more than you will ever know. 

Be Brave!!

I have held back on sharing my story because I was waiting for it to be a happy ending where I am able to run, go for walks and do things with my family. I had such a positive outlook when I first had my leg amputated. I never dreamed that having it amputated would make it worse. This was supposed to be my time to shine and my time to cash in on all the things I had been waiting so long to do. Unfortunately that is not how the story goes. My story isn’t telling about all of the things I have accomplished physically. It is the story of the things I have accomplished mentally and my drive to never give up.

Having my accident happen when I was so young has made this a story of over 20 years of difficulties. Decisions of other people have caused me difficulties that I had absolutely no control over. There have been things where there wasn’t anything I could do to change it or make it better. Things have often felt so far out of my control.

When I was younger my emotions were also out of control. I was so embarrassed of how my foot looked that I wouldn’t show anyone and I really didn’t want to talk about it or how I felt about it either. I would often just try to pretend that things didn’t bother me not only to others but to myself also. When I was alone and with my thoughts was when I couldn’t pretend everything was alright. My parents took me to see a psychiatrist but I was so annoyed by the thought that I had to go that I never even gave it a chance. It took me a really long time to realize that by keeping everything in and not talking about it was making me depressed and even angry. That was super hard to admit too and a whole other blog post.

I honestly don’t know what finally got me to start to shift my perspective but I started to realize that it was good to talk to people about it. It wasn’t until after my leg was amputated though that I wanted to share it with more people. My story isn’t the feel good happy ending story. It isn’t one of how I came back from these horrific injuries to run or some other lifelong dream that I have had since I was 15. It is a story of being brave and still getting up and living life even when it continually knocks you down. I want to share my story even if it helps just one person to be able to continue on in their difficult journey.

I have started going with my prosthetist to UW Madison, UW LaCrosse and soon at Blackhawk Tech to speak with their physical therapy and physical therapy assistants. I get to talk about my accident, what led up to the amputation, what went wrong with the amputation, what I have to live like now and my advice for them to work better with their patients along with any questions that they have.

I have also stated sending out my biography  to different groups and conferences. Each time I do it I get so nervous like I want to puke before I send the email out. Then I remember that the worst that could happen is that they could say no and not want me to come meet with their group. I am so excited that I will be doing a breakout session at a conference for Dane County Children Come First. This has motivated me to start to send out my biography to area principals and alternative schools to see if I could come and speak to their students and staff. I would love to start going to other groups in addition to schools such as medical staff, drivers education, anger management or anywhere that needs to hear a story of courage and bravery.  If you have a group that you would like me to come speak with please contact me. Limb Laugh Love Bio

As Rosa Parks said, “You must never be fearful about what you are doing when it is right.” I feel that even though I get scared that sharing my experience is the right thing to do.

Not being quiet anymore. Getting my blog on…

I have had this blog for over a year yet I have only posted a few things. I don’t know if it is being scared to put everything out there or what it was but that is over. I feel that God has given me the gift of writing and to relate to others. I guess I have felt like I am just an ordinary person with a life that has given me bigger hurdles than others. I still feel that way but I have had several people tell me that I am inspiring to them and make them feel like they can conquer the hurdles that they have by hearing about how I face mine. For that reason I am going to start sharing what my life is like every day and not just the really good or the really bad because there is a lot in between that I haven’t shared. I think it will be good for me too because I don’t always talk about or share how I am feeling, what my difficulties are, what makes things better and what makes them worse. 

I also want people to know that they can reach out to me too. I want people to asked me questions about what I am going through. I want people to share what is going on with them too. I feel like people think they can’t talk to me about what is going on with them because they think I have too much on my plate. I feel like even my close friends feel like this.  While it is true that I have a lot on my plate I love being able to talk to other people about what is going on with them. That is a huge reason I became a therapist is to help other people. Not only is it rewarding but it makes me feel like I am giving back for all the people that have been there for me and helped me through my journey. It also keeps my mind off of things and it helps me put things into perspective that there is always someone that has something worse off than I do. It also will keep me from losing my sanity especially while I am out on medical leave. Having a therapist alone in a house all day is not a good idea. My poor family when they come home and want to chill after being around people all day get attacked by me wanting to talk about everything. My family and friends that come here probably feel like they can never leave because I can’t stop talking. Hopefully by blogging more I can save my family and friends from getting attacked by the locked up therapist. 

What is Life With Chronic Pain

What is it like to have chronic pain? Some days it takes every ounce of your being to pick to get up rather than lay in bed where you know you would actually feel good. It’s having to choose to hurt so you can try to function as a human being, a parent, a spouse, an employee, a friend, etc. It’s trying to not absolutely freak out on people when they try to make your life even harder than it already is. It’s trying to not scream at people who have it so easy yet try to make it seem like their life is so difficult. It’s getting treated like a second class citizen because you take pain medication so you actually can function more than what your body wants you to do. It’s having people judge you based on what they see on the outside even though you are screaming in pain on the inside. It’s staying patient with everyone when you just want to scream or cry or both. It’s trying to be empathetic with people that are going through something and complaining more than you are even though you would be so grateful to have their problem instead of yours. It’s not crying because you feel so awful yet you continue on because you don’t want to let anyone down. It’s not yelling at people that screw your order up, overcharge you, make you have to do extra work to get treated how all customers should be treated, or other small things that cause extra work in a day. It’s not feeling appreciated for the things that seem so big to you yet go unnoticed, unacknowledged and unappreciated by others because they expect so much more. It’s not crying when you’re trying as hard as you can yet nothing seems to be good enough. It’s not getting offended when people stare and assume without ever asking what happened or what’s wrong or any question at all. It’s trying to act happy when you are feeling defeated on the inside. It’s trying to hide your tears in the bathroom, when everyone is sleeping and in the car because you can’t explain the sadness. It’s praying every day to God for peace, patience and less pain. It’s accepting that there is a reason why God has chosen you to live this life for a reason. It’s hoping every month that you won’t need a refill on your medication because this just might be the month where everything changes. It’s answering people and telling them things are good because you don’t want to see the disappointment or the awkwardness of what to say on their face if you tell them that things still aren’t good. It’s choosing pain so you can drive and work rather than take the medication that would make you feel better. It’s keeping your goals without getting your hopes up too much in case they continue to be shattered. It’s being thankful that it’s you going through it and not your kids or family members. It’s being anxious to the point of panicking when it hurts so much and you can’t do anything about it in some situations. It’s being jealous of others that have life easier without ever admitting it out loud. It’s trying to comfort others when they ask stupid questions so they don’t feel bad. It’s walking a fine line of saying how bad things are and being a complainer vs not saying things are too good so people think everything is great and wonder why you aren’t doing more. It’s sitting on the sidelines when you want to be in the game. It’s feeling like a failure even though others tell you that you are an inspiration. It’s having a fear of the future and trying to fathom how hard things are now vs how bad they will be in the future but trusting that God will get you through it. It’s feeling guilty for missing out on things that you would’ve given anything to be a part of. It’s showing others that you can overcome things that seem unfathomable. It’s remembering every day that someone has it worse than you do and that at least you are alive and not fighting a battle for your life. It’s trying to feel comfortable enough to share your feelings and worries. It’s finally sharing your feelings only to have someone tell you that you are lucky to have what you have because someone else has it worse. It’s trying to get those people to understand that you tell yourself how lucky you are every day and that only on the really bad days that you actually share your feelings and fears and don’t need to be reminded how lucky you are. It’s never knowing what the hour, day or night is going to bring you. It’s feeling loved when someone makes life easier for you, gives you a break, helps you, gives you a hug and understands how hard life really is. Its finding peace knowing that this is all happening for a reason and that someday in heaven you will fully understand why. It’s knowing that as long as you are feeling pain it means that you are alive. It’s choosing to continue to live and be grateful for every day that you have with your loved ones. It’s having an understanding of what chronic pain is so you can identify with others that have it too so you can give them encouragement. It’s trying to do the best you can and be the best you can be. It’s being thankful for those who still choose to love you and be friends with you. It’s living…

Hope

Hope is defined as a feeling of expectation and desire for a certain thing to happen. Hope is what drives our dreams, prayers and wishes. It is something that we have every day from the moment we are born till the last breath we take. Some hopes are our own, some have been given to us by others and some are hopes that we think others want for us. We are told from early on to, “Try not to get your hopes up.” We probably don’t even realize how often we say the words, “I hope…” Some of our hopes are small and some are big. Each time one goes by another one comes. It’s all about the unknown.
Hopes can be crushed and cause us to feel devastated and also what keeps us going from one day and sometimes one hour to the next. This time of year we think about it more as many hope to have a better year of health, overcoming personal struggles, finances, organization, or just being better at something. Often times we don’t share our hopes with anyone in case they don’t turn out. When people feel like they haven’t succeeded or see no way of achieving their hopes they can become depressed. If they aren’t sure if they have the right hopes or if they may not have turned out how they worry about what others think of their hopes they can become anxious. I have struggled with anxiety for a long time and have had depression different times throughout this journey. I feel like a lot of times it involved hopes that I had that were crushed and questioning whether or not I was on the right track or not.
Over the years I have had more hopes that I can even remember. Some of the major ones were hopes of keeping my foot, graduating high school, getting a job I wanted, getting into college, finding the right person to spend my life with, having kids, that loved ones could beat cancer and many more. Some have worked out and others have not. Things that I have learned are: if you don’t try you will never know if it will work out, if you don’t share your hopes with others you may be missing out on someone that can help you with your hopes, praying for your hopes is a must even if they don’t turn out how you hoped; even when you don’t want to you have to get up out of bed every morning and live life, you never know when you may be an inspiration for someone else even if you don’t think that you are and that there is always someone worse off than me.
This year I have hopes of feeling better, having less pain, doing more with my kids and husband, no more surgeries, walking, running, writing more, sharing my story with others through writing, traveling, and would love to be able to speak to different groups of people (high school students, alternative high school students, anger management/ road rage classes, health care workers, and anyone else that could be inspired about my journey.