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.

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…