Blind and Visually Impaired Community
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Where to raise a child with severe retinal dystrophy: US or UK? (self.Blind)
submitted by geegaw
We moved to London from Seattle last August, and in Jan/Feb we learned that our 6 year old son is suffering from Severe Early Childhood Onset Retinal Dystrophy (SECORD). He is happy and healthy, although his vision loss has been severe and will continue to deteriorate. We are awaiting the results of genetic tests to determine if any clinical trials will be available. But right now, we're just focus on giving him confidence and independence as he navigates through the fact that he doesn't see as well as his friends.
I've been impressed with the amount of infrastructure in place in the UK (even at the borough level) to help the Visually Impaired of all ages, and getting him used to public transport and city living will help him be less overwhelmed as his vision continues to decline. We are lucky enough to have private insurance but the NHS has been very helpful at multiple stags of this process. London also has a world-class eye hospital in Moorfields, which is also a plus. Our school has also been great at accommodating for our Son's needs, and we have learned that visually impaired students are not uncommon at many private schools around London.
I'm here on a 2-3 years assignment, at that point my family and I will need to decide whether to localize in the UK or go back to the US (or maybe elsewhere in Europe like Luxembourg). London is also objectively one of the best all-around cities in the world, even if not dealing with medical issues, so who wouldn't want to live there?
In the US, we could pick the city we'd move into (although highly likely Seattle or the DC->Boston corridor if I stay with my current role. Some of the east cost cities have decent public transportation and I think cities like DC probably take the visual impaired into their urban design.
Maybe I'm over thinking this, and that anywhere we were are happy as a family will be a great environment to brig up our son. But looking at the r/Blind forum, I can aiming there are multiple people wit a POV on US vs UK.
Any insights greatly appreciated.
I've been impressed with the amount of infrastructure in place in the UK (even at the borough level) to help the Visually Impaired of all ages, and getting him used to public transport and city living will help him be less overwhelmed as his vision continues to decline. We are lucky enough to have private insurance but the NHS has been very helpful at multiple stags of this process. London also has a world-class eye hospital in Moorfields, which is also a plus. Our school has also been great at accommodating for our Son's needs, and we have learned that visually impaired students are not uncommon at many private schools around London.
I'm here on a 2-3 years assignment, at that point my family and I will need to decide whether to localize in the UK or go back to the US (or maybe elsewhere in Europe like Luxembourg). London is also objectively one of the best all-around cities in the world, even if not dealing with medical issues, so who wouldn't want to live there?
In the US, we could pick the city we'd move into (although highly likely Seattle or the DC->Boston corridor if I stay with my current role. Some of the east cost cities have decent public transportation and I think cities like DC probably take the visual impaired into their urban design.
Maybe I'm over thinking this, and that anywhere we were are happy as a family will be a great environment to brig up our son. But looking at the r/Blind forum, I can aiming there are multiple people wit a POV on US vs UK.
Any insights greatly appreciated.
witcwhit 11 points 1y ago
I'd definitely stay in the UK if you can. The social safety net, labor laws, and healthcare are worlds better and the ADA in the US, while a good law on paper, is almost entirely enforced via private lawsuit, which means there's a lot of uncorrected noncompliance.
geegaw [OP] 2 points 11m ago
Thank you. It seems pretty clear the safety net here is quite good, and while I didn't experience it firsthand in the US (since we got my son's diagnosis here), it would be hard to imagine it stacking up to the level of support we get here in London.
annibear 5 points 1y ago
I'm a legally blind dual US/UK citizen. Have spent significant time in both places, mostly in California/Massachusetts/DC in the US and London in the UK. Both have different issues and strengths.
In my experience in London, the paternalism toward blind people is much stronger in the UK than in the US. A few years ago I was reading a paper at a conference and hadn't mentioned I was blind until right before; they were shocked and kept being like "your vision is really that bad??" and seemed amazed when I like, didn't hate myself lol. Had similar experiences doing research and other things there over the years. That said I was just in London a few weeks ago and it was much better than it had been when I was last there pre-COVID--I kept telling my friends "London got woke during COVID!" But still the idea that I was a capable employed blind woman seemed much more surprising to people than it is in the US. Public transportation is also worlds better in London than anywhere in the US. I love the DC metro, but that's probably the best you'll get here and it doesn't compare to the UK or really anywhere in Europe at all. The other thing is the tube staff are in my experience some of the best at helping with blindness and low vision--Heathrow is another story entirely!
I'm glad your son's schooling is going so well right now, but iirc when you get to uni the structure changes in the UK and I think the US may have better higher education laws. I'm not too informed on the UK ones but I think a lot more is on the individual student to organize, as opposed to universities in the US being legally required to provide accessible materials. The US also has a much stronger organized blind movement--this is both a plus and a negative, as it heavily depends on how much you agree with their philosophy.
If you have any more specific questions, feel free to ask or DM me; I'm sure I've forgotten things here lol.
In my experience in London, the paternalism toward blind people is much stronger in the UK than in the US. A few years ago I was reading a paper at a conference and hadn't mentioned I was blind until right before; they were shocked and kept being like "your vision is really that bad??" and seemed amazed when I like, didn't hate myself lol. Had similar experiences doing research and other things there over the years. That said I was just in London a few weeks ago and it was much better than it had been when I was last there pre-COVID--I kept telling my friends "London got woke during COVID!" But still the idea that I was a capable employed blind woman seemed much more surprising to people than it is in the US. Public transportation is also worlds better in London than anywhere in the US. I love the DC metro, but that's probably the best you'll get here and it doesn't compare to the UK or really anywhere in Europe at all. The other thing is the tube staff are in my experience some of the best at helping with blindness and low vision--Heathrow is another story entirely!
I'm glad your son's schooling is going so well right now, but iirc when you get to uni the structure changes in the UK and I think the US may have better higher education laws. I'm not too informed on the UK ones but I think a lot more is on the individual student to organize, as opposed to universities in the US being legally required to provide accessible materials. The US also has a much stronger organized blind movement--this is both a plus and a negative, as it heavily depends on how much you agree with their philosophy.
If you have any more specific questions, feel free to ask or DM me; I'm sure I've forgotten things here lol.
geegaw [OP] 1 points 11m ago
Thank you so much for this. I'm curious: of the cities you frequent in the US, which seems the most friendly for the blind (esp as an adult)? It seems to me that cities like DC or Boston are similar to London that you can grow up there, go to a great university in-town or far away, then there are a host of public and private sector jobs you could do as an adult. I feel like my son will likely do some sort of knowledge work, DC seems like a great place for that.
TheFreebooter 2 points 11m ago
The UK has far safer streets to get around than the US - with blind-friendly pavement slabs near junctions, traffic lights with sound, and an abundance of pedestrianised areas the UK is far superior in that regard alone.
Also fully-pavamented roads too, unlike in dystopia corner across the atlantic.
Anecdotally, I know several blind people and they all get around easily enough here in the UK
Also fully-pavamented roads too, unlike in dystopia corner across the atlantic.
Anecdotally, I know several blind people and they all get around easily enough here in the UK
beardedgoat312 2 points 11m ago
UK healthcare is free
Amazing_Ad7386 2 points 11m ago
Where you grow up and live later in life are two different things. I'm neither British nor American but when it comes to accommodating students I've often heard on here that the US offers better accommodation for students in the form of class adaptation and rehabilitation centers than the UK, especially if you can pick a good private school for your child. Consider also that medicine is likely to be more "cutting edge" in the US (private insurance in Europe doesn't negate this. In fact I think it mostly gets you to cut lines and in private hospital rooms as opposed to getting you risky experimental treatments). I think many therapies get FDA approval before EMA approval, though the EMA is not much slower than the FDA. On the other hand, you **REALLY** would prefer to be a regular adult blind Joe in Europe over the US. If you're affluent it's not a big deal but you really want to live in a more social place where you don't have to worry about how you will finance a $1000 assistive device as a blind adult. You have enough to deal with it outside of that. Also taking an Uber everyday instead of public transport gets real expensive on a regular (typically tight) blind budget.
geegaw [OP] 1 points 11m ago
Thank you for this. From what we've seen the accommodations among private schools here in London seem good (as we've started to survey schools that could be a fit for him as he gets older), but we have only experienced one school first hand and they've done great. I agree that the EU seems to be a better place to be a blind adult but I feel like I've just started to figure out how to even evaluate something like that.
Amazing_Ad7386 1 points 11m ago
To be fair the differences are probably rather minor while still in education and I wouldn't worry about micro-optimizing. The thing that's just particularly difficult to deal with is the car dependence and the precariousness of health care in US society, but that's adult stuff and hey, maybe those things will improve dramatically in the coming decades (which auto company isn't hyped about self-driving cars? Universal healthcare is also no longer a particularly fringe goal in US politics). You should probably focus on your career right now and not worry about very minor details that don't make a difference. Maybe some bureaucratic processes are easier in the US and so it's technically better or whatever but in the big picture it doesn't matter. The most important things are that your son feels welcome at school and gets all the tools he need like digital textbooks etc.
geegaw [OP] 1 points 11m ago
Thank you all for your feedback on this. I have a lot of other questions about life for my son as his condition progresses that I will post on this board from time to time. I really appreciate all of your thoughtful input.
SiriuslyGranger 1 points 11m ago
I would say go back to the U.s. you can not beat the ADA and the amount of civil liberties and civil rights guaranteed. And no I don’t think they are going away anytime soon. ADA is republican passed remember that.
DrillInstructorJan 1 points 1y ago
You can make either work. My history is that I was born in California but we left when I was 2, so I can't really claim a lot of American influence on my life. I could see fine until I was 19 so I don't have the same experience your son will have. All the same my experience having spent time in both places is that the provision of general stuff out in the world is probably better here in London. Pedestrian crossings are easier, even just the existence of sidewalks being almost universal. If you don't live in a big city in the USA people can be a bit rural. It happens here too but it honestly isn't as bad. People are less in your face, you'll have noticed that just day to day I'm sure!
I'm just outside London and I regularly commute in to work on public transport. In LA I just get cabs.
If you can stand the winters I'd say stay here. Also all Americans will think he's smarter than he is because of the accent, it's a real thing!
I'm just outside London and I regularly commute in to work on public transport. In LA I just get cabs.
If you can stand the winters I'd say stay here. Also all Americans will think he's smarter than he is because of the accent, it's a real thing!
geegaw [OP] 1 points 11m ago
The winters here are no worse than we experienced in Seattle so the weather suits us just fine:)
My son is already a skilled practitioner at feeling the spinning knob under the crosswalk control boxes in London to tell us when it's safe to walk.
My son is already a skilled practitioner at feeling the spinning knob under the crosswalk control boxes in London to tell us when it's safe to walk.
OldManOnFire -1 points 1y ago
Either choice is good. Both countries have strong disability laws and capable ophthalmologists. Your son should thrive in either place.
What other factors besides your son's eyesight are you considering?
What other factors besides your son's eyesight are you considering?
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