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Maí 2020

The Freedom of Independence


“Ooohh, isn’t this tragic?” – I looked up and saw a man, he’s was staring at me and kept saying these words, isn’t this tragic, isn’t this tragic, isn’t this tragic?  I knew it would not matter if I protested, he had made his decision and it would not be changed.


The man’s remark echoed in my head for days.  I do not find my life at all tragic; I am living a good life, have a wonderful family, unique friends, am working on the open market and think in most ways it is quite ordinary.  Yeah, it has been and will be a complicated, sometimes unbearable struggle but it is worth it for normality and independence.


My name is Freyja Haraldsdóttir and I am honored to be here on this important NAT-C conference, getting the chance too talk too you today.  I am now twenty years old and have a disability called Osteogenisis Imperfecta which causes my bones to break very easily.  For the past winter I have been working as a lecturer, traveling around the colleges in Iceland, educating students about living with a physical impairment, entitled: It is a privilege to live with a disability. 


As you can probably see I have needed assistive equipments and other services since I was born.  All these equipments have been developed the past years and despite the fact that we have come a long way, we still have a long one to go.  At first I used traditional things for children, like a stroller, pram and a carrycot.  At home I lay on a mattress on the floor.  Since my bones were braking all the time my doctors and physiotherapist tried to straighten my limbs with splints which I hated because they made me itch, sweat and really irritated me, I had a good deal of temper so I did not settle for whatever was offered.  The bones kept breaking requiring us to constantly needing to make new splints and finally we gave up – my arms and legs were already bent anyway and there was not much to do about it.


At three years old I got my first wheelchair, I needed to sit upright more and use my arms in front of me. The chair was mostly kept in my daycare center where I practiced my hands in drawing and painting.  I can not much recall using the chair but I remember I had a difficult time and felt forced to exert myself in a way that made me feel uncomfortable.  At home I had a sponge chair which I loved in every way, it made me feel relaxed and that is how it should be.


The day came when I got my first truck, a red power wheelchair.  I am at a loss for words to explain how proud I was.  Not only could I travel around myself but I was the only one in my class that had such a cool device, which had lights, a horn, could go up and down and again, it was red.  I felt like I had just gotten driver’s license and I could conquer the world.  Indoors I thought the wheelchair was great and the experience of taking part in games and other things kids do was fun.  But when I needed to use the chair outside the sparkle in my eyes faded away and instead I got nervous and insecure.  My surroundings were inaccessible, the footpaths had high edges, doors were too narrow and steep ramps were concerning me where ever I went.  I also had a manual wheelchair and that I felt more comfortable in, sitting and relying on the hands and caution of other people.  There I wasn’t anxious of braking bones.  I learned that it is not enough to have good assistive technique to turn independent and gain freedom; we need to balance accessibility and assistive technology.  But then, what is accessibility, people do not always agree on that?  A couple of years ago I called a spa where me and my friends were thinking of going and asked if they were wheelchair accessible.  Of course, the women told me and added to it that they had sometimes gotten groups of disabled people to their spa.  I was delighted to hear it but before hanging up I asked if they had shower tables and explained that I couldn’t stand in the shower.   No, she replied, we don’t.  I asked how on earth the groups she was talking about showered and she said like it was only natural; well, they just lie on the floor.  How charming!  I just could not wait to go.


Many wheelchairs came and went and when I was ten years old I got a new electric one.  When I was eleven my family moved to New Zealandand I found using the chair much easier.  There I did not find high edges on footpaths, narrow doors, a lot of stairs and inaccessible buildings.  I recognized that the electric wheelchair could give me freedom.  I wasn’t as nervous and finally understood the purpose of it all.


After two years stay on the other side of the world we returned home and the struggle restarted.  I was becoming a teenager and needed to find more solutions.  Lying on the floor was not an option anymore and because of that I had to get a bathing table, bed and something to lie on thru the day when I wasn’t sitting in my wheelchair.  It wasn’t until I got a home nursing service each morning and evening and they refused to work with my home facilities that I stopped lying on a mattress on the floor.  I got an electric mattress that could go up and down as needed, an identical bed and a suitable bathing aid. All of these were much more convenient than the facilities that my parents had worked with before.  It is quite strange that we needed nurses and paramedics to get these assistive devices - our need was not considered strong enoughwhen my family was the only ones assisting me.


Today my family and I are unsure of where we are headed but we are in great need of rethinking all my assistive devices since my surroundings are not as accessible and unfortunately, I am still growing.  Our home is not prepared for these changes. Our living area is not wide enough and the general architecture is designed to my needs as I child, we weren’t able to think further at the time.  We thought it would be secure enough when we built our house sixteen years ago.  I guess one can never be sure of anything.  For that reason I have started looking in to moving out on my own and making a home that suits my needs and offers my assistants acceptable facilities.


Despite the fact that all this has been a struggle there are still many things that have changed and in many ways, we are doing great things today. When I was a small child the tactics were not as developed, the service was more on the premise of institutions and not of the users. The physiotherapist was usually in charge also and the physical matters automatically played a huge part in the whole progress.  My seats were regularly designed to strengthen my body or boost up my skills, rather then making me feel comfortable and enjoying myself where I was sitting all day.  Now I feel that those who service me respect my wishes and all the things that are done, are under my own control.  With full respect to occupational- and physical therapists and their very important professions I think what matters most is that we find ourselves safe, independent, and participating.  Even if it is necessary to increase strength it is, in my opinion, not the most important thing in adding to our adjustment into a functional life.  It would be quite dubious if a person would buy a car with a stiff steering wheel only to gain upper arm strength, wouldn’t it?  At least I think she would be very desperate if she did.


I can feel the respect I get for my opinions from people, and the effort they make to see the solutions and look past the barriers.  As you can see my impairment is severe but I have to say I do not really feel that way anymore because I have a choice and a secure life.  I went to an Osteogenisis Imperfecta conference in the United Statesand met people with the same disability as me for the first time.  It is often said that Americans are extremely modern in a lot of ways concerning disabled people, which they are, but their wheelchairs only focused on strengthening people instead of making them feel content.  Many of them were old-fashion for my taste and all the other users looked at mine with admiration, like it was a royal one and after a couple of days he had gotten the nickname Lazy Boy.


In many ways I would like too see companies that design technical aids work closely with our personal assistants and the independent living centers.  Our assistants are an important part in our empowerment and can make disabled individuals such as myself, lead a normal life filled with qualities.  They need their knowledge end education to do their job properly and with distinction, and without a doubt have a lot too say when it comes too assistive technology.  Along with us, they are also users of these equipments.


It’s very important that the people in this field, we who have impairments, our parents, personal assistants, orthotists and occupational therapists work together in this venture.  Each one has their own expertise, education and vision that can come in handy in these important matters.  Like I mentioned earlier, access can be a huge hindrance and prevent our participation.  Also, it’s no question that we should have designers who are impartial at the center, designers who can direct families and individuals towards the best home and be our advocates in society.  Also it is important that someone has the ability to make these technical equipments not only comfortable, also tasteful.  These things are like clothes to us, we wear them everyday.  We have to like who we are as well as our environment.  A five year old girl will would probably love a pink wheelchair but I think I’d have to be very sick to be in one.


For my own future I think it is necessary that the use of assistive technology is increased.  The technology is a big part of me gaining independence and having the abilities to help myself and not be in constant need of assistants.  They are not bad but our private life is often limited by having a group of people around us all the time and it can get overwhelming sometimes, often I feel like I cant breath because I’m rarely alone.  To be able to travel around your home, turn off lights, open windows and curtains, close doors and lock would for example give me a stronger capacity for privacy.


From my point of view the keystone is also that those who rate our needs for service are not the ones who pay for it.  In those cases the rating is often affected by the lack of financial resources which is not supposed to recoil on the user.  I am fully aware of all the costs but I have heard it too many times.  It’s not possible to rate the quality of life with money as if that was the substructure for civil liberty and wellbeing.  I don’t care what I cost and am not in any need to hear it.  For the record, there is no privilege in having too many wheelchairs or personal helpers.


I have a dream that I can live independently, work in the open labor market, have a family and get as much education as I want.  I need assistance to be free and participate in the society.  I should not have to look for it; but be able to find it all in one place.  A place where there is a strong sense of teamwork and an understanding of my needs and wants.I have always taken part in my own life and that is not about to change.  My highest goal in life is to be in charge and stop feeling like a victim who is remote controlled by the system, because then nobody can say that it is a tragedy to live with a disability.  I believe the disability will then step aside and the individual steps forward to enjoy the freedom of independence.


Freyja Haraldsdóttir