A wheelchair is not confining

Posted by Karen - March 10th, 2018

There’s an expression often thrown about in the media, which is that such-and-such person is “confined to a wheelchair”. Before my daughter was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), I never thought much about this phrase. Now? Different ball game.

So what’s wrong with saying “confined to a wheelchair”? In a nutshell, it’s inaccurate and comes from an ableist perspective. Look at it this way – if you’re saying someone is “confined to a wheelchair”, it sounds like you’re suggesting that the wheelchair itself is somehow trapping the person. As in, if you are convicted of a crime and sent to jail, you are “confined to prison”. If it wasn’t for being locked in a cell, you could get away and fly free! From the perspective of the person with no disability, being forced to use a wheelchair would indeed be confining, like a prison. But hey, it’s not people without disabilities who use wheelchairs, now is it? That’s the ableist bit; not considering who is using the chair. For your typical wheelchair user, the expression “confined to a wheelchair” is just flat wrong. But for the wheelchair, the person with a mobility-limiting physical condition would not have more liberty of movement – they would have LESS movement.

Take my 13-year-old daughter Miranda. Her level of physical ability changed significantly in the past year. She went from being a girl who could walk almost as long and far as anyone else to someone who can ambulate only short distances, slowly, bent over, and with a cane. If I’m out somewhere with Miranda and she has to walk more than about 100 metres, I start to seriously sweat. In short, Miranda has become someone for whom a wheelchair is a necessity.

At the present time, we have only a manual wheelchair. Miranda sits in the chair and someone pushes her; she can’t use her arms to propel the wheels, unlike a person with spinal cord injury paraplegia, because her arms are tightly fused to her sides. This is obviously not perfect, but even the manual chair gives Miranda a lot more liberty and ability to live an enjoy life. Because of the wheelchair, Miranda can go out to shopping malls, restaurants, parks (well, at least some of them), and more.

One of those times when Owen pushed the wheelchair instead of me. I'm kind of entertained by how bored he looked, ha ha.

One of those times when Owen pushed the wheelchair instead of me. I’m kind of entertained by how bored he looked, ha ha.

Having a taste of the freedom granted by the manual wheelchair, we are looking forward to the day we have Miranda’s power chair. We are currently going through the long, drawn out, and sometimes aggravating process of getting a motorized wheelchair funded through various funding sources and adapted for Miranda. The chair has been ordered and I think has even arrived with our rehab program, and we have a series of appointments set up in April and May to get the necessary adaptations made (nothing is ever easy and straightforward with FOP!).

Being able to use her own power chair will be so great for Miranda. She is already planning all the things she’s going to do once she has it, including getting her brother to teach her how to use public transit (which she intends to do WITHOUT PARENTS, LOL).

Having a power wheelchair is not going to confine my daughter. It will set her free.

While all this house stuff was going on, we had an appointment for Miranda to test drive a power wheelchair. Miranda can still walk, but we need to get her set for the future.

Taking a test model out for a drive…


2 Responses to “A wheelchair is not confining”

  1. Jessica Scully says:

    It is if you are a fly-on-the-wall in my own house. The seriousness be able to have your own independence rather it be a motorized wheelchair or dependable Personal Care attendants other than a family member are serious concerns all of us that have fop. I have been trying unsuccessfully for the last 3 years to purchase a new motorized wheelchair. What is a problem you would ask only for me to say is that Hamilton County developmental Disability Services continually drops the ball each time I have tried to get one. I went to the vendor that received the contract for my County for durable medical equipment only for me to waste $2,000 private insurance funding. I then went to Cincinnati Children’s Hospital and had to get a face-to-face with my doctor once again for her to write a prescription for both a wheelchair and a physical therapy which cost another $1,000. Once I had the prescription in hand I called to make a seating Clinic appointment and the prescription would being out of date when I was able to make the appointment only to be told even though that piece of paper is no good it will at least get you in the door. Cincinnati Children’s Hospital then did what was done before at a cost I’ll close to $3,00. Both Cincinnati Children’s and Hamilton County DDS dropped the ball and that process alone took four months from the appointment until I got a decision for my private insurance company. I called continuously do you find out where things were I’ll let you be told they are in the queue and I would just have to sit and wait. I then went to a vendor that has provided wheelchairs to the public for over 40 years only to be shot down again saying that I did not go to the two vendors they have for the close to 8,000 people they are serving between children to adults that need moblity equipment. My current 11 year old chair has not seated me properly for at least 4 years and I have expressed my concern about how uncomfortable it is and the flare-ups that are occurring on the back of my of it. Because of using all of my money that I had saved for years to pay for my personal care I have drained all of my money to fund personal care and had to apply for what services were available to me to retain what Independence with each new normal due to flare ups. Good luck with the process getting a do motorized wheelchair Custom Seating and any other adaptation she may need.

  2. utilisateur says:

    Thanks a lot for the blog article. Want more.

Leave a Reply