For this post I will discuss how we are able to or will be able to broaden the normality and reduce stigmatisation for people with either muscle dystrophy or persons that are wheelchair bound. As discussed earlier in the course the people with visible disabilities are often more prone to stigmatisation then people with disabilities that are harder to see just by looking at someone. However I would argue that a solution for one type of disability is not exclusive and could be used to help others with similar problems. Hence I will discuss both and see what can be done with the technology available today and what might happen in the future.
First we need to define stigmatisation, I would define stigmatisation as a process in which a person is looked at in a special way because they are using specialised tools or equipment to be able to do something. This can be a feeling someone can get used to or not care about. However it is often detrimental to one’s self image and if we have the ability to alleviate it we should be doing that to the best of our ability. From the movie “Disability the truth” they interviewed a lot of people with variety of disabilities and the message from the persons in that movie were in an overwhelming majority of cases that self-esteem and self-image was what mattered most, which is why this is such an important topic.
So what do we use today? Usually if you have a walking impairment you are stuck with using some kind of wheelchair or electrically driven chair. These are usually not very aesthetically pleasing and you cannot go wherever you like, and in the case with the electrically powered chairs they are usually bulky and even more problematic than the wheelchairs. All of the devices are thoroughly safety tested to the point where it is getting to a ridiculous level. For example if you need a bed that you can lean and angle, you cannot get one that looks good and comes in for example a double bed format. You have to get a hospital style bed that has been tested for many times the weight specified.
There are people already making headlines by being innovative by themselves and modifying for example Segway’s into powered wheelchairs. Genny mobility is one such company that sprung from a disabled man’s idea of a new type of wheelchair that could traverse more terrain be electrically powered and not be horribly bulky. He was basically tired and not interested in the dour wheel solutions which were to him limiting and aesthetically questionable. He looked at a Segway and figure out that it could be modified to work for a seated person as well.
Figur 1 Genny Mobility 2.0
With its big wheels and relatively small frame you can get over to many more places than with a regular wheelchair and it also is quite a good looker that comes in a variety of colours.
There are also other fields being explored that exists today but might be even more useful in the future. One of those fields are exoskeletons. Exoskeletons are complete or partial body covering machines that can be used in a myriad of applications. One driving force behind the development of exoskeletons are the US army. However much of the technology used in the army application of the product can also be used for people with muscle dystrophy and wheelchair bound people. They work by enhancing your abilities for speed, endurance or lifting. Thus far there seems to be only one commercially available exoskeleton. It is made by a Japanese company called Cyberdyne. It comes in a few different versions (Fig 2) and is classified as a hard exoskeleton. It is important to note that they have taken their time to design the exoskeletons so that they are visually appealing. This means that they look like something that anyone could or would wear rather then something someone only wears out of necessity which should in theory reduce the stigmatisation associated with the device in question.
Figur 2 The HAL exoskeleton, lower limb and full body version
However there are also other versions of exoskeletons being developed. For example there are some exoskeletons that are soft working with fabric and small motors. These are unfortunately not suitable for wheelchair bound people since they lack the necessary stabilisation that hard exoskeletons give the wearer. However for people with muscle dystrophy they could be worn under clothes and hence minimise the stigmatisation of using the device. One such device is being developed by a team at Harvard University, it is still in its early stages of development but they believe that in the future with smaller motors and batteries they can make the exoskeleton almost invisible.
Figur 3 Harward soft exoskeleton
However to get rid of stigmatisation for good you will need to broaden the normality of these devices. This comes with a few problems, the first problem is price. These machines are expensive and will probably continue being expensive for the foreseeable future, The HAL exoskeleton can be rented for 1000$ US per month. Secondly the devices such as wheelchairs and exoskeletons are not used every day by people without disabilities. There are no reason to why a person without a disability could not use a wheelchair. However they are usually specialized tools that are cumbersome to get around in and are usually quite ugly. Some things are being done to combat this problem however it is a quite slow process, partly because the market is quite limited and partly because the restrictions that government agencies impose on testing for devices makes it both hard and expensive to be able to sell these through the government and for people to buy them through government aid.
Scientists and researchers think that sometime in the not so distant future everyone will be wearing some kind of exoskeleton in our daily life and no one will have to deal with this kind of disability anymore. This will drastically reduce the stigma associated with the devices. However until then all we can do is make sure the design of the devices we have today is as functional and aesthetically pleasing as we can make them.
Non-excluding Design 