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!”