Some time ago I came across a video where a deafblind lady makes some interesting considerations associated with visual and hearing disabilities, pointing out how expensive it is to be deafblind. Being both blind and deaf is economically more expensive than if you have one of the two disabilities, not only as the sum of the costs of both disability aids, but also because more aids strictly related to deafblindness are necessary.
However, while RustyCyot takes into account the costs of technical aids, Braille books, audiobooks, … I would like to draw attention to another kind of expenses, noting with some examples. how and why to be visually mpaired and / or hearing impaired is expensive.
For a person with Usher syndrome type 2, basic aids we almost cannot live without are:
Hearing aids: Something like 5000 €. The Italian Governament gives € 650 per ear every 5 years. If you do not break anything first. In any case it is a total of 1300 €. The other € 3700 you have to get them out of your pocket. I think in the USA the situation is bit different as Health Ensurance can pay up to 90% of the aids. In Germany it is very difficult to get any support at all.
For 6 years I used Widex Senso Diva CIC hearing aids who gave me a lot of problems (about 300 € of expenses for repairs every 6 months during the last 2 years. Total 1200 €.) Now I have abandoned them, and I’m using hearing aids of 15 years ago.
Glasses and magnifying lenses: I have four pairs of glasses. One for reading. One to work at the computer, with yellow lenses. One to see from afar. One with orange selective filters, to use outdoors.
Total? I do not know exactly but it’s pretty well known that glasses are expensive. If there are special filters, costs increases. I would say an average of 150 € per pair, for a total of 600 €.
The estimate is certainly lower as I am choosing cheap frames, otherwise you should add about € 100 per pair.
I always carry a mangifier and at home I have a Headband Binocular Visor Magnifiers, but these objects of few Euros.
Fkashlights and Batteries: I always have with me a Maglite D Cell LED (70 €) and a headlamp (70 €), There are cheaper ones, I know, but I have tried everything. They break after a few use and are not enough bright. These two models are the top of the market.
Add the cost of batteries, both for hearing aids and for flashlights.
Of all the aids available, there are some that would make life easier, and I will need them in the future and that other type 2 Usher already use .. White stick (200 €), electronic magnifiers, talking watches, …
However, to generalize about specific aids do not make much sense because everyone find the most useful in relation to its activities, capacity, residual hearing and sight.
Some people use speaking compasses , others fill the house with lamps, others need cochlear implant, others use FM system, others who can not manage without videomagnifiers.
However, since many devices are expensive, often the economic inaccessibility becomes the limit. For example samrtphone would be useful in many occasions.
How many times I got lost in a city, even at night or in the evening and I could not read the map.
Often it would be useful to take a photo at the subway map to enlarge it an see the little names of the stations immediately on the screen.
Many applications that appear to be only gadgets are actually real aids. (Instant sign language translators, speech readers that make easier writing text messages instead of typing on tiny keyboards characters even smaller …)
But so far, we are still in the field of aids.
The costs that many do not consider are others.
Sometimes it is necessary to reach a place where public transports do not get or you have to change a few means. Other times the stations are too dark, stops invisible, timetable boards hidden in the darkness of night. In many cases, a taxi would solve the problem, but it costs 10 times as much, just to keep it low.
I can not even use a bicycle, forced to pay a ticket for short distances.
In all this is not even considered the fact that I have to give up completely to attempt to reach the most inaccessibile places, such as mountain resorts, villages in the country, the taxi option in these cases is beyond dispute. So the comparison is limited to places where I need to go, leaving out the places where I would like to go.
I admit that there are other reasons why I’m not following the treatment with Vitamin A that more doctors have advised me to do. But surely I desist also for the high cost of medicines and do not make the effort to swallow one pill a day.
HOUSE: RENT AND / OR PURCHASE
Going to live in suburban areas where the cost per square meter or rent rate would be lower and more accessible it becomes closely related to the reasons discussed under transportation. Since I have not alternative than public transport, it is necessary to live in an area well connected to a transportation network. Usually this is a parameter that increases property values.
Even in this case it is difficult to generalize because if Italy itself has huge differences between urban and suburban, between north and south, the comparison becomes even more difficult when considering other countries in the world. However, being an Usher could become one of the many parameters that guide the choices and therefore people’s habits, as well as another person may need to live near the sea or on the hills.
These compromises can not be evaluated economically.
In this case, the economic calculation is reversed. That is the loss of earnings, consequently, is reflected on all other items. Usher Syndrome limits the possibility of practical employment, like many other disabilities. In fact we are deemed invalid, unable to work, to the point that in Germany you have to change job if the disease degenerates. I know the case of a teacher of kindergarten. It ‘ s obvious that, for the safety of children could no longer do that work, finding himself unemployed, invited by the State to learn a new profession.
But for those looking for casual jobs, where no special qualifications are needed, the possibilities are limited. Often these jobs require mobility, speed, dexterity.
Working in the kitchen, to do the carpenter, the bellman, the valet, to ride a bike-taxi. All excluded. It does not come to my mind another job but the receptionist. If it still remains a sufficient residual hearing.
As I have written so far the situation seems dramatic (and perhaps it is), but I certainly do not feel sselfpity for myself. The solutions can be found, always (or almost). Perhaps a higher dose of will is needed, but as far as I know it is free.