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Limb Difference Awareness Month (and what YOU can do)

By Stephanie Catros

I was thrilled to be asked by my good friend Christine to write a post in honor of limb difference awareness month. My husband and I are the parents of an amazing little four-year-old boy, Milo. Not only does he love to ride his scooter in the park, learn about dinosaurs, build robots and play with Legos, he was also born without most of his right foot. He is referred to as a congenital amputee. He has been wearing a prostheses of some sort since he was seven months old. Since August 2018 he has been using a silicone foot.  With silicone, he’s able to put his foot on in the morning with the aid of an adult and comfortably wear it all day long. It has been incredible. However, it has not always been the case and often is not the case for congenital or traumatic amputees. 
The first few years Milo used various types of prosthetic equipment and often could only use his prostheses while he wore high top sneakers to secure the equipment to his leg.  What that ultimately meant was that when Milo would take off his shoes he was left with his residual limb, which resulted in somewhat uneven walking, potential injury to his fairly vulnerable amputated side and more than your fair share of stares and questions!

There are so many incredible spaces in the city that I desperately wanted my toddler to be able to explore. Often times these spaces required socks only or bare feet.

I was asked by UP-STAND how business owners could make their spaces more accessible to children and people of all abilities. Obviously, I cannot speak for all of the amazing people out there who are living with various visible and invisible differences, but I feel it imperative to share what I’ve learned from both parenting my son and from being an active part of the different ability community. Obviously, based on my experience, some of my suggestions and information will be specific to children and seeking accessibility in order to take advantage of everything there is to explore in the city.  

Parents of children with differences have to do a lot of extra prep work when going to a party at an unknown space or for an outing at a place space. My routine has always been that I look up online to see pictures of the space and to see any potential dangers for Milo if he were to go barefoot or just in socks. Unlike typically limb children, if Milo were to hurt his amputated side he would be unable to wear his prostheses while he healed, which would then mean he would be unable to wear shoes during the healing process. This can result in days of our staying in the house.  Our orthopedic has always implored us to keep Milo in his prostheses as much as possible. Due to his limb difference, there is a slight length discrepancy in his legs. Although it is slight now, repeated impact of running jumping and climbing could result in serious damage to his knees or hips and the need for a knee or hip replacement later down the road. Due to the fact that Milo often had to wear shoes in order to wear his prostheses, my husband and I have always insured that Milo have a designated indoor set of shoes. The shoes will never touch the ground outside and I kept and Milo’s diaper bag so that we were always prepared to offer an alternative to bare feet in any home or business that we visited.

In the attempt to make sure that my child has an equal opportunity to share in these spaces, I have a multi-step routine that I have followed for years. I always call ahead and asked to speak to the manager and explain our unique situation. People on the phone are typically incredibly receptive and understanding. I explain that we have specific indoor shoes that are clean and offer to show them to whomever is working at the front desk before Milo enter their space wearing the shoes. Additionally, I offer them my name, my contact information a brief description of my son and what he will be wearing so that the manager can alert any of her staff that Milo has the approval of the manager to wear shoes in a designated no-shoes space. I have even offered to email a recent photo of my son so that staff would be able to recognize my son and know that had been granted an exception to the rule. 

However, upon arrival there always seems to be a breakdown in communication. I cannot tell you the number of times I have had to have unnecessary and unwanted contentious conversations with desk personnel about allowing my child into their space in the way that we had previously agreed with the manager of various establishments.  This often continues when we get on the floor of the space. For some reason, there seems to be a real lack of communication from the management down and then my son is often stopped and questioned by various members of the staff and told her he has violated the rules of their space and that they then insist that he remove his shoes. There is even been an instance when a staff member ripped my sons shoes off, causing his prostheses to also come off and it caused him great embarrassment and distress. Can you imagine someone essentially ripping off a piece of your child’s body without the consent of you or of your child? I still feel fairly traumatized by that situation. To other children so often who have not been exposed to people with differences; It can be frightening to see a grown-up essentially tear off another child’s limb.

So what can be done about this? Communication. If an individual of the staff received a request from a parent and the parent is able to offer a description of both the child and their clothing, this information should immediately be disseminated to all of the staff for that day. It is not enough to simply write down a note at the front desk to memorialize conversations such as the ones I have above outlined- staff should receive training to alert a manager and that manager should hold a brief staff meeting to provide this information all staff.  It may seem small to some, in my experience, it can make or break a family outing.

Establishments should post both in the front of their business and online that they are open to granting exceptions for specific cases and offer a phone number to call. I often hear other parents in the limb different community indicate their fear in taking their children to play spaces because they don’t want them to be singled out or embarrassed or just don’t want the extra attention if their child needs to expose their prostheses or residual limb to people who may not be aware of their difference. We all just want and deserve our children to be treated fairly and equally regardless of their circumstances. A sign that welcomes people of all abilities immediately puts family with needs at ease.

I have seen and encourage businesses, specifically active spaces, to reserve designated times for children and people with different abilities.  Locally, LIC Kids, a gym in Long Island City, holds classes for children with autism- an incredible way to welcome children and families of all abilities.  

Sometimes a business is simply physically inaccessible for people living with differences.  So often in New York City businesses have multiple steps leading into the front door.  For people living with or caring for a person who uses a wheelchair, walking aids or other physical assistance- these businesses are difficult and often impossible to enter.  This translates as businesses being unwelcoming and exclusive to our community.  This can be easily remedied by purchasing a  portable ramp.  They come in various lengths and can be purchased for under $250.00.  Purchasing the ramp and storing it inside the premises simply isn’t enough. It should be readily accessible and near the front door. Additionally, there needs to be a clear, multilingual sign displayed in the front window that should indicate something to the effect of ‘People of all abilities are welcome. Please let us know if we can assist you in entering our business in any way. We are happy to set up our ramp to aid you in entering and exiting’ and a phone number should be provided on said sign so that people can make a quick call to the business so that they may set up the ramp.  Each and every employee should be trained and proficient in safely and efficiently setting up the portable ramp and taking it down. 

Clearly this is not an exhaustive list— it’s but a beginning of small steps businesses can and should make to make their space more accessible to people of all abilities.  Just because people may be physically atypical doesn’t mean that they have any different interests or rights than physically typical people.  I look forward to a time in which I and other people in our community don’t have to have a multi-step process before we even leave our home to travel to a business to ensure accessibility, until then businesses MUST strive for ALL people to feel welcome. 

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