Leaving my house is a big ordeal for me – it needs planning well in advance of going anywhere. Apart from the obvious, I need to consider who is taking me, how am I going, how long the outing will be, how many caregivers are needed and if there will be eating involved. Ha ha it is such a mission, often times ending up as a mission impossible!
Before I go anywhere, I always need to do a site-check ahead of making the trip. First and foremost, I need to check if where we are going is wheelchair accessible. If the location has only two or three steps, then it is manageable – I can simply arrange for my wheelchair to be carried. Anyplace with more than three steps however, is off limits for me; because my body has no muscles to anchor me in my chair, I am petrified of falling off. As a result, that rules out the majority of the restaurants, coffee shops, and even friends and relative’s homes. You might think, ‘but aren’t there elevators in most buildings?’ well apparently, wheelchairs don’t fit in most elevators – a minor oversight with building regulations in Jordan. If everything is ok, I have to pray I don’t need to use the bathroom! Ha ha, that is definitely wheelchair unfriendly – the bathroom stalls are usually too small to fit wheelchairs.
Being confined to a wheelchair is hard, but being confined to a wheelchair with nowhere to go is a travesty. I live in Amman, Jordan which is well known for its beautiful weather, especially in the summer evenings. I would love to go out for a “stroll” (or in my case a roll) for a breath of fresh air, but frustratingly, that is out of the question due to the fact that there are hardly any pavements (or sidewalks). Meaning that whoever is assisting me would have to push my wheelchair on the road instead, which is not only dangerous but also very bumpy, causing my wheelchair to shake and ultimately making my ride uncomfortable rather than enjoyable. Another activity I used to love doing before being diagnosed, was going to the cinema. Unfortunately, that is now also ruled out as the majority of cinemas in Amman are not wheelchair accessible – whether it is the theatre itself or the mall the theatre is placed in. I end up canceling the plan all together as it is too stressful to deal with, defeating the whole purpose of going out.
All the above mentioned activities can be considered privileged outings which I have accepted to live without. However, what frustrates me the most is attempting to see a doctor or a dentist. The majority of doctor and dentist clinics here do not have access to wheelchairs – they either do not have ramps, or their clinics are in buildings with an elevator that is too small for any wheelchair. Whenever I have my regular check up at the doctors, I am obliged to admit myself into the emergency ward at the hospital instead. Furthermore, it took me two years to find a dentist that is wheelchair friendly which was a big ordeal since regular dental checkups is a necessity for us ALS patients.
Please know that it gives me no joy to point out the mishaps in my country. I have tremendous love and appreciation for my community; for those who know me, know that I have given and received so much from it and I am forever grateful for that. However, I am disappointed at the lack of consideration to the wheelchair community on multiple levels from urban planning, to zoning ordinances, to building code regulations and I feel obliged to shed the light and bring awareness to these issues.
These difficulties are just a a fraction of what we have to endure in order to leave our house. So When I finally do find somewhere that ticks all the boxes and you see me out and about, I always have the biggest smile on my face. A smile that shines to deflect the looks of pity and the negativity. A smile that overcomes my inability to speak and says loud and clear “I am okay! I am so happy and I am out of the house!”
beautiful
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My very dear Lana,
I enjoy reading your blogs tremendously, you write beautifully, I feel so much with you and what you are going through. I understand how difficult must be for your case to live in a country so unfriendly for wheelchairs. London is amazingly friendly for wheelchairs, you should be living here!
Lots of love to you and hugs
Angele
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Dearest Angel, nice to hear from u, true London is wheelchair friendly, but it doesn’t have the beautiful weather, or family, and most important my caregivers,,ha ha.
love hugs,,,and kisses
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I’ll take for a stroll around king hussein park anytime. 🙂 Just say the word.
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Thank you, very kind of you.
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Omg Lana what an important message to send out to all concerned!! This is an issue that warrants serious attention in Jordan!! In the meantime ready to “roll” you anywhere you please Habibti!!
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Habibti, bless u
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I totally agree Lana, unfortunately it is true. Awareness and perception are required and this issue need to be taken urgently into consideration by every member in our society.
hank you for sharing this Lana, very interesting,…
and one more thing…I’m now officially addicted to your blog…Yepeee! 😉 ❤
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Habibti Shaza, It gives me great pleasure u r enjoying my blog.
unfortunately the issue of wheelchair inaccessibility needs intervention on the highest level, but they simply do not care.
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You are a very brave woman Lana habibti God bless you and grant you all the strength you need in this path !
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What’s even worse is that corporations do not cater for the needs of the handicapped in terms of vacancies and in term of accessibility as well. They think it costs a lot to make a building wheelchair-accessible when in fact it’s not.
I work at ProgressSoft Corporation, a software company on Amman that has recently finished the work on making its building fully accessible by a wheelchair and we have been even sponsoring job fairs designated for people living with disabilities, hoping to see a trend for the other companies in the country to start thinking about the rights (and not privileges) of people living with disabilities.
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Hats off to your company, hopefully more will follow in their footsteps
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Someone needs to launch a disability rights campaign with government backing. Rights to a social life is fundamental to wellbeing. Quite a shock to read your blog.
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Enjoyed reading it , you have highlighted important issues that warrants government attention and intervention.
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I hope your hotel is wheelchair friendly,,,,I might roll in to one of your restaurants soon,ha ha
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Habeebti, the way you shed your beautiful light on the simple things that we take for granted everyday is both humbling and heart warming. Your courage dedication and positivity is an inspiration to us all
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Habibi, my blue eyed fox, it is your love, support and encouragement that keeps me going.
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A truely correct sad post Lana. Al Hussein Society make yearly 3 – 4 governmental schools wheelchair accessable and builts even outdoor wheelchair adapted alivators . Amman Municipaluty should not permit any new building that is not Wheelchairs accessable which also surves baby carriges . The society is measured by the services , culture and arts that it offers to its citizens and we Jordanians should be capable to do that.
Love your blog Lana, and we should organize some outings and discover those friendly wheelchair places .
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I enjoy reading your blog Lana, your fighting spirit and your positivity. You are a true inspiration to us all. All the best always.
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Hi Lana! My name is Lindsey and I am from Aston, Pennsylvania. I met your son Karim while attending Penn State. One day I noticed he was wearing a “strike out ALS” bracelet. My mom also had ALS. We may be from two different parts of the world, but our connection to ALS gave us a unique understanding of one another. I always enjoy seeing Karim at the Philadelphia Walk to Defeat ALS! I am excited to continue reading your blog and I will be sharing it with those around me!
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Hi Lindsey, any friend of Karim is a friend of mine. Thank u for your kind words, and for sharing my blog.
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Very interesting post. I’m really surprised to read that most doctors surgeries are not wheelchair accessible in Jordan. I would have thought if there was one place that wheelchair users need to be accessible it is doctors surgeries! I am a wheelchair user living in the UK. Over here we have the Equality Act which makes it illegal to discriminate against disabled people, although it’s not perfect. Is there any disability rights legislation in Jordan?
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Unfortunately Alex we have no such laws, but we must hope for some improvement sometime in near future
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